You didn't get a screen capture or anything?
Considered it, but if that stuff is actually classified in some way, I have no desire to have it/broadcast having it.
Until your update, I didn't realize there was anything up but some tweets that seemed out of place.
I saw it right before it was suspended, and they had posted what appeared to be military plans, personnel records and things like that. They wrote something like "American soldiers, we know where your families are" and namechecked ISIS.
I saw it too but didn't bother to click so I could read the info on the pics they posted figuring it could be anything and was probably BS.
Nixon's in fine form on this one:
https://twitter.com/dick_nixon/status/554703569077956609
I think that's a fake account. If it were really President Nixon, he'd have people pay for a verified account.
2. I'm sure Cryptome will have that up before long.
I wonder if this is like the cases where someone's twitter account was hacked using info obtained by first hacking a shopping account via password reset over the phone.
"We're trying to stream The Battle of Algiers but we can't remember our login info. Could you help us reset our password?"
It's pretty quiet around here, so maybe this is a good time to ask this question. Is it possible to have a conversation about suicide without people freaking out? I'm hesitant to bring this up with anyone I know in real life because of the reactions I might get.
I've had a bad medical problem for a year or two now that's mystified every doctor or specialist I've seen (the timeline is a bit fuzzy since it developed gradually). I finally tried asking The Internets and it turns out my symptoms are suspiciously similar to the symptoms for an obscure and untreatable genetic problem. It looks like it will take me at least six months to see a specialist for that. With luck, it will turn out to be something else and I'll get the good news that I have some unknown problem that might possibly be treatable if anyone could figure it out. But maybe I won't be lucky and I'll get confirmation that this will only get worse. Then what?
In general, I seem to have a pretty high pain tolerance. In the past (in circumstances unrelated to this condition) I've turned down painkillers on multiple occasions when doctor or nurses very strongly recommended painkillers and I felt fine every time. I'm still at a manageable level of pain with this today, but if it's something where there's no treatment, something that will only get worse, someday I won't be at manageable level of pain. Maybe that will be in a year, and maybe that will be ten years, but it seems like it will eventually be inevitable.
I'd like to have this discussion without being institutionalized. Is that even possible?
el pez, I'm sorry to hear about what sounds like a really tough situation and very sorry you're in pain. Smearcase or Bostoniangirl could speak to it with more certainty, but I'd think this wouldn't trigger anyone's professional requirements to scrutinize or report you. I think you could drop the word "suicide" and talk about this as "euthanasia" or there's probably some better euphemism instead. You seem very lucid in your thinking and I don't see why that would scare people.
With whom would you want to have such a conversation? Family members? Therapists? Friends (presumably fairly close)?
11: This is flip advice from someone who doesn't know you or anything about you, don't take me seriously. But. If I knew you, I'd be pretty worried if you were talking about suicide under those circumstances.
That is, while the bad medical problem sounds terrifying, it also sounds as if there are a whole lot of unknowns. It could get better while remaining mysterious; it could get diagnosed as something treatable; it could stabilize at a manageable level of pain compatible with living a reasonably happy life. That it seems urgent to you to talk about what to do in terms of suicide if it ultimately makes life intolerable, given that life isn't now intolerable or close to it, and there's no good reason to think that intolerable pain is inevitable, makes me think that you're thinking about suicide not so much as a rational response to intolerable pain (which might be rational, if it came to that) but because you're depressed.
Can you talk to a therapist about dealing with emotional issues around the medical problems, and bring up suicidal thoughts in that context? I think you're probably safe in terms of not getting institutionalized if you deny concrete planning.
Friends (yes, fairly close), therapist, and doctor.
I don't normally see a therapist but my physio recommended I talk to someone who specializes in pain issues. I haven't found it to be particularly helpful, but then again I'm also not saying what I really think, so maybe that's not surprising.
13: Yeah, that makes sense. I wouldn't be surprised if I'm depressed. It's quite unpleasant to even walk to the car and this has kept me from doing much of anything except going to doctors and physical therapy for the past year.
Even ignoring the pain, the limited mobility by itself would be enough to make me pretty unhappy. The prospect of that not improving is, in a non-clinical sense, pretty depressing.
Part of the reason that I'm so pessimistic is that I've been hearing about how this will probably get better "soon", from multiple people, for maybe a year and a half now. But, on average, it's only gotten worse. I am really tired of people telling me that things will get better.
It's possible it will get better or stabilize. At the physical therapy facility I go to, I met a guy who's been paralyzed below the waist for (IIRC) 8 years for reasons no one has been able to figure out. It gradually got worse for the first two years and then stabilized and that's that. Maybe my condition is like that guy's, and things will just stop getting worse. If so, that's not great, but I suppose that's ok. Given my recent experience, I wouldn't bet on things not getting worse, though.
15: Speaking for myself, I have been impressed at the level of false confidence that I, personally, have been persuaded to put in internet medical guidance.
Maybe I'm wrong to consider myself an appropriately skeptical consumer of information, but I've been suckered by stuff that, even now, seems legitimately sourced and directly applicable to my situation. The internet is great and all, but it can seem far more reliable than it is.
Even ignoring the pain, the limited mobility by itself would be enough to make me pretty unhappy.
Oy. This is awful for you, and I completely understand that it must be horribly depressing. But (and tell me to shut up if I'm being unhelpful), even if the mobility impairment is significant and permanent I think research shows that it's very plausible for people to return to pre-disability levels of happiness not all that long after becoming significantly disabled. (Again, this is flip advice, and that link was five seconds of googling, but it accords with what I remember reading elsewhere.) Hard as it is for you now, you'd hate to give up on a satisfying life because you thought the low point of adjusting to whatever your ultimate level of mobility turns out to be was as good as anything was ever going to get for you.
At this point, you have a possible diagnosis; you have a plan to run it by a specialist, even if it takes six months; you can get a therapist (do get a therapist); there's a lot of things to do before you need to consider whether suicide might be a rational best option.
Oh, the other thing I was thinking was along the lines of pf's 15. While it might be six months to see a specialist, you sound as if you're seeing doctors more often than that. Have you run the scary-sounding diagnosis past them? It's possible it can be ruled out easily by a general practitioner, which still leaves you in doubt, but at least not looking at whatever the scary diagnosis is.
17: Yeah, I'm still going to see yet another specialist and not just decide that I have this thing.
I expect that my experience is unusual but I once had a really bad time when a doctor misdiagnosed something. When I asked the internet (by which I mean described my symptoms on a forum, not that I googled it) multiple people immediately correctly identified what was going on and told me to go to the hospital immediately, which probably saved my life.
That doesn't mean that the internet is always right, but this is pretty similar in that this diagnosis would explain things pretty neatly.
10: I echo LB's thoughts, and also 17.1.
The hard problem is getting buy-in from the people you want to have understand your choice. I really don't think you should even mention it before you know for certain what your prognosis is. Once you have (and assuming the Internet isn't wrong, which fingers crossed it it) and have spent some time in treatment, I'd perhaps start with talking to a close friend and gradually expand the circle of people who you've talked to. Those are going to be some rough conversations, but I don't see a way to get acceptance without doing something like that.
It's my understanding that the threshold for involuntary commitment is based largely on violent behavior and/or demonstrably impaired decision making. It's hard to imagine that a) a therapist or medical person would try to get you committed or that b) a judge would ok it just because you're talking about the possibility of suicide a while from now in a pretty rational way. (I'm building in here some assumptions about class, education, the ability to assert your rights, and the resources to back that up. God knows plenty of poor, and especially homeless, people get locked up at the drop of a fucking hat.)
18.1 is the important point, really, though it depends a lot on the details of the disorder. The question to ask in general isn't whether it would make your life not worth living but whether someone (unspecified) could live a life worth living if they were in that situation, because invariably if you ask the first one you're starting from a baseline of the life you're actually living right now (which might not be possible). But in the case you're imagining your lifestyle would, obviously, change a lot and people adapt in the direction that would lead you towards the satisfying life you imagine for someone else.
That said, depending on the possible problem the answer to the second possible question could very easily still be "no". But even leaving aside questions about suicide though you really do seem to be thinking in depressive patterns, which is hardly surprising given the situation and how long you've already been dealing with it, and that's going to affect how hopeless things seem. So unless there's a strong possibility that you could become incapacitated within a short period of time (making planning ahead necessary) I'd say it's probably better to leave it aside and focus on figuring out what's going wrong (or just decide to assume that it is what you suspect and start thinking through any lifestyle changes you'll have to make as a result - if you're wrong, well, people are wrong a lot of the time and at least feeling like you know what's going on is better than anxiously worrying about it).
And sorry to hear about this, el pez. It sounds horrible.
Poor you, all around. I think that before you get a real prognosis, it's probably not a conversation to have unless you have an incredibly trusted and sympathetic confidante. I'd hate to be in limbo for that long, but I suspect the consequences would be pretty bad if you get someone who panics during that conversation. Would your proposed diagnosis meet criteria for physician-assisted suicide? There are practical aspects, too, that you might want to consider a bit more privately before discussing (if you haven't already. It sounds like you're more in a space asking whether you could or should than wondering about practical stuff like assets, survivorship, life insurance nullification, etc.) Or maybe game it out as a "what if" with a friend. The girl with brain cancer does give you a conversational opening to discuss worst case scenarios while keeping the conversation very hypothetical.
In practical terms, are you seeing someone who is medicating you appropriately? I think lots of people have pain that's undermedicated and poorly managed. That might be more helpful than a therapist dealing with pain issues, which is what I think you meant? Not sure about most pain clinics, but that might be a good bet. Honestly, being proud of a high pain tolerance is probably making this harder. Get what you need and take it. Give yourself a break. Use whatever mobility aids you need.
19: Yeah, there's an online system I can use to send a message to my doctor. I've been meaning to send a message today but I've been putting it off for no good reason.
It's certainly worth doing, but I don't know that much will come out of it. After getting the standard tests for autoimmune issues, a doctor (I can't remember which, perhaps not my primary care physician) mentioned that it might be some obscure genetic thing, but that those were hard to test for and didn't really follow up on that. From chatting a bit with someone who definitely has the condition I'm worried I have, it sounds like it's very commonly misdiagnosed because it's so rare, so I'm not sure how much peace of mind I'll get even if my doctor is convinced that it's not some horrible untreatable syndrome.
And definitely, definitely, definitely find a therapist, someone who you can see every week if you can afford it.
I have wondered about 18.1. One of the bigshot pop psych or pop econ people wrote a book with at least a couple chapters about that, which I read a few years back, and I was vaguely familiar with some studies from old pscyh classes.
But then why does this feel so bad? I see that the paper in the link has a timeline of four years, so maybe I just need to give it another couple of years.
Also relevant to the stuff in the link, people (friends and people who are maybe not quite friends) keep offering to help and I keep turning them down. I should probably stop doing that.
I've been meaning to send a message today but I've been putting it off for no good reason.
But then why does this feel so bad?
people ... keep offering to help and I keep turning them down
These are all ways that depression fucks with you. No matter what happens with your health in the long run, you don't have to feel this way now.
But then why does this feel so bad?
Some theories: first, the doubt. You don't firmly know what's going on or what the prognosis is. My guess is that even if whatever your worst case is turns out to be true, that'd be easier to deal with once you knew for certain.
Second, pain. Pain will make you unhappy, and you should be pursuing appropriate treatment for yours as aggressively as possible.
And third, like you said, the adjustment. Whatever limitations you're dealing with, they're still pretty new. If you arrive at a stable new baseline, with some time to adjust to it it might not be that bad.
I think E. Messily should definitely be in on this conversation.
Commitment laws vary by state. I haven;t heard of a state where what you're describing would qualify.
Still, I would avoid using the word 'suicide'.
I would tell someone--probably the therapist who will have time and unless CBT-oriented be more holistic--that you value mobility and that being pain free is important to you. How important is it to be clear-headed is a question that you should ask yourself. Then say that maintaining quality of life is important to you and you want to be aggressive about managing pain even if the measures taken shorten your life.
One thing you might do is contact a researcher who specializes in the genetic condition you think you might have, because they might know where you can get the test done. Genetic test results, especially for rare stuff, are often done by just one or two labs, and can take months or years all by themselves, so it would be good to start that process if you can.
32: Yes, this definitely sounds like her bailiwick.
On the bit about mobility aids, I've asked most of the people I've seen about getting a wheelchair and every single one of them has had an extremely strong negative reaction to that. I can understand why -- people often lose mobility once they get a wheelchair, which leads to even more problems. But, with the exception of a good couple of months that ended a month ago, I already don't go anywhere or do anything (except physical therapy) and that's how it's been for the past year, so I don't think I can really get much less mobile.
I've tried using crutches and canes, but my joints (wrists) really aren't up to it. One problem that's typical of how conversations with doctors have gone is that I've been unable to convey how weird it is that I'm getting wrist pain from using a cane. Multiple people told me that was totally normal. Maybe for some people, but that is really weird for me.
A few years back, when I was climbing more (erm, at all), I could almost do an unsupported one finger pull-up, and I could easily support my entire body weight on either hand and throw myself around just using my upper body with no problems. But I'm somehow unable to convince a doctor that it's weird that I get bad wrist pain from using a cane for 10 minutes a day when I used to be able to support my entire weight on my wrists for hours.
Anyway, I wonder if I should just buy a wheelchair off amazon (or wherever one gets wheelchairs) despite the advice of every doctor I've talked to.
I have no words of wisdom at all, but am sending you good wishes. .
A few years back, when I was climbing more (erm, at all), I could almost do an unsupported one finger pull-up, and I could easily support my entire body weight on either hand and throw myself around just using my upper body with no problems.
This makes your level of sadness about your medical condition make even more sense; if you identify yourself as a physical badass, which it sounds as if you did and should have, it must feel like losing that part of your identity. This probably also isn't helpful, but I do see at least some part of how you must be feeling.
(I still wouldn't put yourself in a wheelchair against medical advice. Not that I know a damn thing about it, but if all your doctors say it's a bad idea, it's got to be a bad idea. Have you got any options in terms of wrist braces or something like that?)
And I will stop with the pushy advice now.
I'm having flashbacks to pdf23ds, who talked about suicide as a rational response to unhappiness, and I didn't really take it seriously because he sounded very reasonable about it. And then I felt incredibly guilty when I found out he had killed himself. But that's not your problem, and I shouldn't be hassling you because I'm still upset about him.
Hey, no problem. I appreciate it, really. I remember pdf23ds and was also really sad that I didn't what I could have (which may not have made any difference) to reach out to him more.
But yeah, my usual mechanism for dealing with stress is to call up a friend and run sprints for an unreasonably long amount of time or hop on my bike and just ride until I'm exhausted or something similar and not being able to do any of that is probably a significant contributor to my current mood.
Jesus, chronic pain is incredibly draining and will definitely make you depressed. I've had to go off my arthritis meds a couple of times and each time both my psoriasis and arthritis have eventually flared up; dealing with them makes me wonder how I handled it in the past. And yeah, it's a horribly double whammy when the thing that's affecting your state of mind prevents you from doing precisely the things you'd normally do to feel better.
Sympathies on what sounds like an objectively tough situation. I'd be one more vote for seeking therapy and realizing that you're potentially depressed in addition to whatever else seconded.
As to the medical issue, there's a resource for identifying the existence of tests for various conditions independently of your physician's referral. Here's a listing of the many tests available for a well-characterized condition, phenylketonuria:
http://www.ncbi.nlm.nih.gov/gtr/tests/?term=phenylketonuria
There's a search interface of course, though I do not know if all tests are identifiable by disease name. If you have difficulty using the public interface, I'd be happy to help however I can to see if there's anything relevant to you in that database.
Your medical team sounds kind of lousy to me, sorry to say. If you have truly inexplicable symptom combinations, lots of very large research centers have "medical mystery" type units. You should be getting referrals to serious experts by now, not shrugs. Do you have a super pushy person who can go do a come-to-Jesus with your PCP at your next appointment? Frankly, I'm sort of pissed off on your behalf. I know enough folks who have had their lives saved (at least, extended well past median survival) by getting a really good team of docs at a medical research campus vs local hospital/community center.
I'm sure that just managing day to day is taking a lot out of you, but if you have anyone who can be insistent and demanding, that might help. It's a lot to expect you to do yourself.
I have things to say about this but I'm on a short layover in Phoenix & am about to be on another plane for 5 hours. Maybe you'll still be talking about it tomorrow? Or, email me if you think I could be informative/helpful. However, I'm a pretty hard line "disability is not a good reason for suicide" proponent so I might not say things you want to hear.
Shorter 44: Paging Dr. House
(Wiseassery aside, I agree with ydnew.)
I'll add to my counsel of skepticism re: internet, it's also entirely appropriate to be skeptical of doctors who, like all experts, are merely people who have spent some time studying and thinking about things. You, too, can study and think about things (and can even use the internet to that end). It's possible, in some cases, to become more knowledgeable about your issues than a physician.
There's an inherent advantage in consulting someone with clinical distance, but there's also an advantage in first-hand knowledge. This is also something I've seen up close.
44: I don't know how it's supposed to work so this seemed possibly normal-ish to me, although I would consider the service subpar if it were another industry. This started getting really bad around the same time I moved to a new city. There's a major research university with a med school here, and a lot of the doctors around here (including everyone I've seen) are associated with that system.
In the system, specialists are heavily booked and it's often a 3 month wait to see one. So what's happened is that I'll see someone, and then if they're, say, a surgeon, they'll say that I'm fine since they don't see anything on the MRI and I'm not a surgical candidate, so I'll go back to my doctor and she'll recommend another specialist, which will take a long time to see, and so on. Also, when this first started getting really bad, my primary care physician was out on maternity leave and I saw a couple of stand-ins who basically told me to wait for my doctor to get back from maternity leave, which was a pretty unhelpful. IIRC, the first was a nurse who was basically triaging things and told me that I needed to see a doctor (as if it wasn't obvious it was serious?) and then there was a doctor who gave me some generic but not particularly useful advice and suggested that I see my PCP when she was back in.
In the last city I lived in, I could normally get in to see a specialist on a week's notice. I suspect that I would have gotten better service there, but who knows? I've considered calling up my old doctor from the old city to ask for advice, but I'm not sure what that would accomplish. It's not like she can examine me.
I don't think I'm explaining this well, but the thing that ticked me off about having two separate appointments while my PCP was out was that it seems fairly obvious to me that if someone basically can't walk it's probably quite serious, and also enough of a hassle to get to an appointment that making an appointment so that a nurse can do triage to determine if it's really serious enough to see a doctor is ridiculous.
And now that I think about it, I have the order of the appointments reversed. I saw a doctor first, and when my PCP came back from maternity leave, to get an referral to see an ortho person, I had to see a doctor, but to do that I had to go through this nurse. My insurance will pay for appointments with specialists without a referral, but it seems to be difficult or impossible to bypass the referral system if I want to see someone in the city I live in who's associated with the giant school/hospital system.
48: old doctor might know of people at a city close-ish. Like in New England, you might be closest to Portland, Maine but go into Boston for something rare.
I've considered calling up my old doctor from the old city to ask for advice, but I'm not sure what that would accomplish. It's not like she can examine me.
This actually isn't a bad idea -- she can't examine you, but if you had a good relationship and she'll take you seriously, she might be able to feed you some keywords to say at your next MD appointment to get taken seriously. I mean, I would think "I can't walk further than to my car", when you were rock-climbing a couple of years ago, should trigger a fullscale medical freakout (in the productive sense of freakout), but it sounds as if your doctors have not caught on to the fact that you are really very significantly ill. Maybe with some advice from a sympathetic doctor, you can get that point across better.
(Also, does your insurance company have any resources? A nurse-line or anything? That maybe you could call and talk to for advice on how to medically escalate?)
OT: Some genius in the comments at the AVClub just came up with a charming collective name for the Williamsburg-to-Portland shuttle bands:
"Beardsley Sulkingham and the Coffee Shop Sads".
I bow my head in respect.
Jesus, El Pez, that fucking sucks. Sorry to horn in with 52.
Wait, House is real? This is blowing my mind.
54: that was my reaction to chatting with folks at the medical/PT facility I go to. I think that's maybe one of a few places in town where people end up if they have weirdo mobility/joint issues. There aren't that many cases where the doctors have no idea what's going on, but there are enough that the incidence must be greater than 1 per 100k, and maybe even 1 per 10k.
Re: the therapist thing, my girlfriend has been on my case to try another therapist for a long time, and I should probably do it. I've seen two different ones, including the one who specializes in pain issues (who I still see occasionally, but who's overbooked like all the specialists around here), and I haven't found either to be particularly helpful so I've been reluctant to try with a third person.
I'm getting on a plane again now but my primary response here is that you need new doctors. Many doctors are really stupid and bad at problem solving, and very resistant to admitting that they can't solve everything. You need a doctor who listens to you and can be creative about finding ways to deal with the current situation, independent of the specialist parade and/or diagnostic success. Easier said than done, I know, but worth putting a fair amount of time and effort into.
Bye! More later!
Couple of other thoughts. Does anyone in your family have anything like this? Something worth asking if you think it's something genetic. And if it really is a rare disease, rather than indifferent doctoring, you might check out NIH's Undiagnosed Diseases Network.
I am sorry to hear that you are in pain and don't know why. I am probably jumping ahead a few steps, but, do I understand that you have a guess at the genetic disorder it might be? If you do have a guess that has a name, is it something that has been traced to a single gene disorder?
I ask this because I did a lot of hunting stuff down for my boys' hydrocephalus, and the big thing I learned is that the labs that test for single gene disorders are just commercial companies that would like to make money by selling you a test. It seemed so medically mysterious to get genes tested, but when I looked into it, if you know the gene/syndrome you are testing for, a handful of places will test for it and they often have posted price sheets. They want to deal with your genetic counselor and insurance, but even if you don't have those, they will happily sell you their product for money. They say 2-4 weeks and take six, but it is no harder than buying a plane ticket. (My guess is that a six month estimate means that they aren't sure what gene to test for and are checking a few genes one at a time.)
If you have a syndrome name, and it is linked to a gene (there are databases you can check) and you can pay a few hundred dollars, you can find out in a few weeks what your combination is. If it is anything more complicated than checking one gene, you need better advice from a real genetic counselor. But checking one known gene can be no harder than any other commercial transaction.
A new doctor is a really good idea - and ideally in both senses of the term. (Younger doctors are probably less secure in their sense that they can solve everything without listening to you, or at least some of them, but there's also the fact that almost all doctors practice based on what they learned in medical school, including the ones who are now in their fifties or sixties. This isn't universally true, but it's way, way more true than it ought to be and is probably true of all doctors to at least some extent.)
As far as the specialists go, you could try insisting on being referred to all the plausible ones in one go, and then figure that when it works out with one of them you can just cancel the rest of the appointments? That's the sort of cynical gaming of the system that would appeal to me once it became clear that the system itself wasn't working to well as it stands.
That all sounds rotten, el pez. I had some horrible times a couple of years ago where I basically staggered to my car, desk, car, couch, bed, for months on end. My physio tried different things which ought to have worked but didn't really. The orthopaedic surgeon unhelpfully told me that if I couldn't exercise then I ought to lose weight and he'd refer me to a dietician. Which yes of course actually losing weight would have helped but since I struggle with my weight when I'm well it wasn't going to happen when I couldn't even stand at the cooker for 20 mins. Also I know damn well what the "right" way to eat is I just can't keep it up. The worst was the faint sense I got from my friends and family - who were trying to be helpful - that I wasn't really trying to solve this. It's hard to describe. Forex I got so tired of everyone amateur and professional telling me to go swimming when I couldn't even put on a swimsuit without crying from the pain of getting the damn thing on. They had no idea even that I was mostly sleeping in my clothes because getting changed was too hard. I was so miserable and also angry that they couldn't understand that this was just my life now and nobody treating me had any answers for me. And I knew what was actually causing it and didn't have the fears you have - my heart really goes out to you.
Eventually I got on the upside and into a controlled / managed situation by adding in occasional treatments from a massage therapist who tackled stuff from a different angle (without being too far on the woo side). Maybe you are already seeing somebody but pain and immobility can set off all kinds of knock-on muscular tensions and reactions - it could be worth seeing if you can get some relief even if it never does anything for the underlying problem. I wonder too if you have some muscles that are unusually strong from climbing and so on which are maybe going into spasm or something.
I hope you can get some better medical care anyway - whatever comes down the line it doesn't sound as if you're being properly looked after.
Not much to add here but my sympathies. That sucks. Also there looks to be lot's of good advice in this thread.
I'm in accord with ydnew in 26. Get your facts solidly nailed down first before discussing irreversible options with anyone. Best wishes.
No concrete advice here, el pez (though others in this thread seem to have some very good ideas), but loads of sympathy.
And at the risk of sounding too intrusive, please do not give up (on finding new doctors, maybe finding a good therapist? exploring alternative pain management options). Okay, I guess that sounds like advice? but just reiterating what others have already suggested.
el pez, it seems you're partially contending with a frustrating over-gatekeeping insurance plan and under-capacity network
I think California may be the only state requiring some health plans provide access to specialists within a set amount of time, and even that can be flouted, but you might look into whether your state imposes any such regulations, and make a complaint, or otherwise bend someone's ear, over doctor visits that refuse to open the gate for administrative reasons, and burden you in your current disability.
So terribly sorry you're going through this, el pez. As exhausting as it is to try yet another therapist, they are so different from one another that if you can possibly stand it, I hope you can keep vetting them until you find the one who can help you. FWIW, I've had good results from, "I need to feel free to talk with you without censoring myself, please tell me what kind of conversation would put you in a position of having to alert someone else." You don't want the vague reassurance. At least two very experienced ones knew what their limits were and were explicit about them. This was extremely helpful at the time.
El Pez, the UK medical system is so different from yours that it's almost impossible to give prcatical advice. Megan's suggestion of testing for single gene disorders sounds good though. In the meantime, you can be assured of the sympathy of another imaginary friend. And all the advice to treat the depression is good.
58: I do have the name of something! Unfortunately, there isn't a single gene that's implicated. I'm probably a lot more skeptical of the internet diagnosis than you might think from reading my comments here.
On the one hand, people reading a (partial) list of symptoms who have been diagnosed think that it sounds familiar and that I might have this syndrome. And the list of symptoms for the syndrome also includes basically all of the problems I've been having that I didn't list because I didn't think of them as being related to my joint/mobility problem.
On the other hand, the base rate of the syndrome is quite low. Additionally, diagnosis seems to be a total mess because the syndrome encompasses a lot of different "types", some of which have one gene implicated, some of which have multiple, and some of which are still a mystery. Something that I don't understand is why it seems to be common for people to have a mix of symptoms from multiple types. If it's associated with some specific set of genes, wouldn't people usually fall into a single type, especially if it's something extremely rare? I suppose some of the genes could often go together, but from what I've read so far I don't see an explanation of that. Maybe that's something that's so obvious it's not considered worth mentioning?
Anyway, the result of that mess is that the list of possible symptoms is extremely long, and it's not really clear to me that having the particular set of symptoms that I have is indicative of anything.
Not to 58, but generally: in retrospect, I'm not sure why this was bothering me so much yesterday. It's obviously a bad situation, but there are lots of ups and downs, this isn't the worst it's ever been, either in terms of pain or mobility. Ok, I am probably depressed. And my girlfriend was suppppeerrrrr worried about the internet's speculative diagnosis, which probably got me worrying more than I normally would. And my lease renewal is due.
Do I want to renew my lease? I have to do it in the next couple days if I'm going to do it and if I don't, I'll definitely need to look for a new place to live in a few months I'm renewing the lease, but it's sort of bad no matter which way I go. Long story, but I quit my job over this because my manager was extremely unhappy that I was sometimes working from home (for my programming job that involves some combination of sitting in front of a keyboard and typing and sitting in a videoconference room for meetings). My understanding is that I could have legally compelled the company to not try to manage me out because of this, but that seemed like it would be both incredibly stressful and ultimately pointless. Why work for someone who's really angry at me for something that's beyond my control? I was lucky enough to start my career right at the beginning 10-14 year run of what seems like it must be a huge bubble in programmer compensation, so I can walk away from a horrible situation at work without worrying about it too much. My one major concern here is that the programming bubble will pop and I won't be able to find work.
I moved to this city for this job, and also dragged my girlfriend here to the same employer, which is basically the only game in town for interesting programming work unless you're a researcher in a field that I'm not in. Her vesting cliff is next month and she's unhappy for reasons that are independent of my manager not being a great manager and would want to move anyway. She's just started looking for work. If I could hop on a plane and fly out to interviews I probably would have already started looking for work. I've been dragging my feet on that for a long time in the hopes that things would get better but it now seems pretty clear that I shouldn't expect that to happen any time in the near future, regardless of whether or not the internet has correctly identified the medical problem. I'm kind of dreading telling prospective employers "I can't fly out for interviews so we'll have to do those remotely. Oh and by the way once I start the job I may or may not actually make it into the office, ever." If I can actually land a job in the next few months and we move, renewing the lease will have been a waste of money. But if I can't, I really don't want to move into a temporary place and then move again when we manage to get jobs somewhere else. I should just renew the lease and then break it if we manage to leave town before the new lease term expires, but it really bothers me to waste money if it's at all avoidable because I was poor growing up.
Anyway, I basically feel better about this at the moment. Or at least as good as it's possible to feel considering the circumstances. I do wonder why I felt so bad about this yesterday, though. That's happened once before and I find it a bit worrying that on two separate occasions I spent a day thinking that the situation is almost entirely hopeless. In both cases I felt (relatively) fine before and I'm not really sure why I had such a bad day.
If I haven't said this already, thanks for the comments, everyone.
65 is right about therapists. Also, some will let you do a 20-minute phone consultation to see if they are likely to be a good fit.
67: If flying out to an interview is excruciating then presumably moving is going to be a similar if not worse pain in the ass (and joints). I'd suggest renewing so you at least have your feet firmly on the ground w.r.t. housing at least. Endure the lousy boss for as long as you can while you figure out what is going on with your body and see a therapist to get your mind squared away. You really don't need additional hassles right now. I know your mind is probably going a million miles an hour, but try to focus on the big issue for now, which is figuring out wtf is going on with your body.
I think he's already quit the bad job (if I'm wrong about that, I'd agree with you that he should sit tight, and do what he can working there).
But togolosh is right about the lease. At this point, it sounds as if you have limited physical/mental resources. Even if it's a waste of money to renew the lease if you're going to move in a few months, that's money you're spending on making your life easier, at a time when you need your life to be easier. That's what money's for, if you have it, and it's not a waste.
69: She's got an unhappy situation; pez has no job.
Is there a city where you would both lie to live where she could get a job and you could look for work too?
This topic has come up before on this blog, and I'm a little confused by the fear of involuntary commitment people have expressed, because I work in mental health, and as far as I've ever been witness to or been taught, no one has a hair trigger, and you really have to say, "I want to kill myself, I have the means, I'm not willing to work on a plan to deal with suicidal feelings, and I don't think I can commit to at least putting it off until our next meeting." I'm curious whether people's fear of this comes from direct experience or knowledge of settings I've never been in, or just a free-floating miasmatic fear.
To illustrate my degree of calm about this issue: I was acutely suicidal for a while last year, to the point of researching methods, and I was totally unafraid of telling a brand new psychiatrist very explicitly that I thought about killing myself persistently throughout the day and I was looking into how I might. It never crossed my mind that this would get me committed. She asked to see me four days later, and asked whether I thought I would be okay till then, I said yes, and that was the end of it. Even if I had said no, I think her next move would have been some attempt at safety planning, not calling the police.
Miasmatic fear, I think. You work in mental health, so you interact with a number of different practitioners, and have a sense of profession-wide norms. People who don't work in mental health know that there's something you can say to a therapist about suicidal ideation that will get you committed, but don't necessarily have anything to rely on about where the boundaries are. The fear is probably disproportionate, but it seems very explainable to me.
And also there's this One Flew Over The Cuckoo's Nest residual idea that once you're in, they won't let you out, no matter how sane you act.
Nobody is willing to pay for that anymore. They want you out so you can get Medicaid.
And also, tons of sympathy to el pez.
75 is assuming we are talking about poor people. If you are middle class, the incentives are even worse.
I was about to post a version of 75. Jack Nicholson would have been kicked out after three days. Beds in inpatient psychiatry are a scarce resource. No one I've ever met wants to use one for anything other than a very strong reason.
I get miasmatic fear. I just have this urge to reassure people that it's okay to talk to their therapist about suicidal thoughts, but then I, infected by the miasmatic fear, wonder whether there's some place I don't know about where people are getting committed at the drop of a hat.
whether there's some place I don't know about where people are getting committed at the drop of a hat.
Yes, there is. Although, even apart from that, note that your answers in 72.1 are really not all that far from the commitment triggers you list in 72.1. They seem far apart to you because you know exactly what the commitment triggers are, and you knew you weren't tripping them. But most people aren't aware of these fine lines, and someone in the same mental state you describe in 72.2 could easily have answered a bit differently than you did and gotten themselves committed.
In my (indirect, out of date, restricted to certain states) experience, people with long term problems involving severe psychosis will be very frequently threatened with "do this or I will have you committed." Maybe that is going away because everybody has figured out that it is usually an empty threat.
75 is, however, right. Involuntary commitment will likely be 24 or 48 hours, not months or years. But that can still be quite disruptive.
80: they still are. I knew someone who was saying he would sign himself outbof a hospital but the psychiatrist would have committed him. Very different situation though.
I don't say that it is always a bad idea, either the threat or the commitment.
For finding a job, this site might be worth a look.
I, um, had someone committed once upon a time. The person in question agreed to sign in for 72 h voluntarily, but when I called 911, I was told that my word would be enough to have him picked up and taken to a psych facility if he didn't agree to go. It was years and years ago, so maybe it is different, but it was scarily easy. I don't think the situation I experienced was especially ambiguous (without the benefit of extra life experience), but it seemed like the sort of thing that should have been harder.
el pez, will try to follow up on 44 in more detail, but it will take me a little while to write out and pull links, and I've got data to analyze and a talk to put together, but I'll post here later today if you'll check back about how to get yourself (maybe) a better team.
Yikes! I am sorry to hear about your situation, el pez. I just want to nth the recommendation for new doctors and a new therapist. Maybe even place the therapist as a priority, because getting the depression under control should make doing everything else a bit easier.
In the mean time, would you consider trying acupuncture or seeing a Chinese medicine practitioner? I know many people here probably think it's bunk, but I know people for whom it has been quite effective with pain and nausea. At the very worst it probably wouldn't make things worse.
I'm being a bit slow about responding to everything, but yes I'll check back and if you have suggestions on how to find doctors who are more, to use a buzzword, proactive, I'd appreciate it.
It turns out I have my old doctor's email. She gave it to me and asked me to keep in touch when I moved and of course I've been terrible about keeping in touch and haven't done that at all. But at least I have an easy way of contacting her.
57: I know very little of my family medical history, but it's plausible that my father has the exact same problem. However, there's a more likely alternative explanation for the symptoms he's had.
He's had joint problems/pain ever since I was born. But there is a simpler explanation for those problems, which is that he was very near an explosion that almost killed him when he was younger. He will never admit that he's having problems but he's walked with a limp my whole life (at least for as long as I can remember) and I can sometimes see him hiding his reaction to some pain. He wears wrists and ankle braces, which is something people have recommended for me. If I put too much stress on my wrists (by, say, putting 10lbs. of my weight on a cane when going to and from the car), I'll get wrist pain afterwards if I do something as strenuous as lifting a large spoon; bracing helps that. Since he will never admit to having problems, I don't know if he's having similar problems, but that's a plausible reason he'd wear braces all the time.
He now has osteoarthritis. That's one of the likely complications of this syndrome, but he's also at an age where it's common to develop arthritis. Considering the low base rate of this genetic thing and the high incidence of arthritis in people his age, I'm not sure that means much.
71, 85, etc.: on the job situation, it's objectively quite good and I just have the SWPL concern of finding interesting/satisfying work in a place where my girlfriend can find a job she'll probably enjoy. We haven't talked about what will happen if our best options are in different cities, but considering that I dragged her out here so I could work in a job that was interesting, it only seems fair that we go wherever her first choice is. I should definitely look into remote work options, which wouldn't be my first choice, but make sense now.
My girlfriend would probably prefer a mid-sized city (maybe Portland sized). In the past I would have preferred a huge city like NYC, but given that I can't really walk and am unlikely to be able to walk or handle being crammed into a subway car in the near future, maybe I should prefer a small city where it's easy to get around by car, or failing that, a car-centric city where people have hellish commutes, like Houston.
86: I had a very helpful therapist explicitly state the law at the very beginning of our first session some 20+ years ago so I was very careful to stay away from that topic in any form. Then out here, after my partner died a few years ago, a new therapist explicitly told me he would not do anything unless the "harm to others" seemed imminent. (The subject came up because I was giving her stuff away and looking for good homes for it. Giving stuff away is a sign, apparently.)
Anyway, a therapist knows what their triggers are, their patients/clients don't know for sure no matter what is said, and once the legal machinery starts grinding it's hard to stop it.
I'm feeling like this is a thing where individual details etc are important enough that general/anonymous advice is next to useless. Nevertheless, I have two remarks, both of which assume that el pez is in the US but would also broadly apply in most of ETE.
1. There are laws to protect you from being discriminated against (this includes being fired) for needing accommodations (such as working from home, but also including many other possible ideas like accessible office space and flexible hours) to do your job, as long as you are actually able to do the job. You would have to disclose your disability (chronic illness counts) to HR in order to get that stuff to kick in, but in my experience this also makes people a lot less angry and cranky because they stop imagining that you're trying to take advantage of them and instead feel guilty and would like to be helpful.
2. All the people being all worried about involuntary commitment etc I think are wildly underestimating our society's hatred and fear of disability and sickness. Find a right to die state and you will be able to get a doctor to help you out with a morphine overdose. No one is going to commit you in this situation, they'll all be too busy saying "oh my god I would totally also want to die if I were in chronic pain/needed to use a wheelchair/etc etc etc". You are going to have to fight a lot harder to get the stuff you'd need to live than the stuff you'd need to die. I am not supportive of the suicide plan but I don't think you need to be very worried about people trying to stop you. Unfortunately.
Anyway I have, at this point, a substantial amount of personal experience* as well as political opinions and legal information, all of which I would be happy to share privately with interested parties. My email's linked under my pseud.
*Pretty sure I'm moving home & applying for disability this summer, if not before- I've now reached a point where it's unlikely I can keep working, even with all kinds of flexibility and accommodations.
If I put too much stress on my wrists (by, say, putting 10lbs. of my weight on a cane when going to and from the car), I'll get wrist pain afterwards if I do something as strenuous as lifting a large spoon; bracing helps that.
This reminds me that if you haven't tried it already, it might be worth talking to a physical therapist about this. One of the things they're really good for is showing you adaptive ways of moving that are easier on your body. (I remember the first time my old physical therapist showed me how to stand up from the ground without hurting my knee; it was the most magical thing ever.) Not to say that it'll definitely help, but I know that there are ways of holding a cane or crutches that will put more and less strain on your wrists.
Apologies if I'm telling you stuff you already know.
I've now reached a point where it's unlikely I can keep working, even with all kinds of flexibility and accommodations.
Damn, sorry to hear this. Even though you've said as much before.
I was intending to speak specifically about commitment for talking about suicide, not for psychosis. Anyway, I am curious whether people know of people who have been committed against their will for saying to a therapist that they were thinking about suicide, and if they know what kinds of things they said that prompted it.
I hear you, Abe, but I guess I disagree that the only reason I see a lot of daylight between what I said and what would get you admitted to the hospital is that I know what the triggers are. I will/won't act on these feelings in the next few days seems like a big distinction to me. If a therapist tries to come up with a safety plan, and you repeatedly insist, no that wouldn't work, I would still want to kill myself, there is no way I can make an agreement to control that impulse over the next few days, then it seems to me that's either because you really are in very imminent danger of impulsive suicide and should probably be committed, you want to be committed, or you're having an intense interpersonal reaction to the therapeutic situation that's expressing itself pretty explosively. I guess what I was trying to say was that in settings I've worked in, people have a lot of freedom to talk about suicidal thoughts, and really only saying that they could not control it in the immediate future could trigger that kind of action. I have trouble imagining how settings that are quicker than that to admit someone to the hospital against their will function. You'd be calling the police right and left. It just seems practically untenable, in addition to all the other problems with it.
(The people I've seen who were in the hospital for talking about suicide, rather than attempting it, were patients with a borderline diagnosis who'd had multiple admissions, wanted to go to the hospital, and were familiar with what kinds of things to say to get themselves there.)
92: I'll send you an email after I get back from this appointment I have to get to. I have an appointment with the psychologist who specializes in pain management in half an hour so I should leave now. IIRC, my last appointment was either two months ago or three months ago because this person is so heavily booked.
On '1', there's a really long story there but I was candid my manager the entire time and that didn't help. More on that later, maybe.
Also, your situation sounds obviously worse than mine. Sorry you have to deal with that.
93: My PT has been pretty good about that, but I still appreciate the advice.
but I was candid my manager the entire time and that didn't help. More on that later, maybe.
As someone who's peripherally involved in this stuff both as a manager and as a litigator, I think Messily is right that you want to bring in HR. If you're dealing solely with your manager, while you'd that would be the low-conflict, we're all grownups here, way of managing it, people get hostile and unhelpful and like you're asking for special favors. Once you bring in HR (assuming you're in a big enough organization that there is an HR), you're likelier to get the employer reacting as if accommodating you were an ordinary part of doing business, as it should be. (Not that HR is always going to make everything perfect, but it helps.)
Sorry to hear about your situation, Messily. If there's anything I can do let me know.
Nothing to add but condolences and concern for you both.
Same here; I'm sorry things are getting worse for you, Messily.
95: the guy I was thinking of talked about it a lot and then tried to as soon as they took him off a one-to-one.
92: accommodations are tricky. I asked for an accomodation from the state to leave 15 minutes early to get to a medical appointment, and my supervisor's boss just said that I should schedule it for my day off.
Out as having a disability too.
Oh wow, this is a tough thread to read. I'm sorry about your health, pez and Mess.
I have been through so many rounds of such stupidity from doctors that I have more or less lost any remnants of hope that they are actually going to do anything helpful in any situation ever. But when people, like, break a bone or have the flu or whatever, doctors do seem to have some appropriate remediary strategies. I GUESS.
Anyway after a bunch of years of no one accomplishing anything, I finally have a team of doctors (Johns Hopkins for the win! or at least, for the less-infuriating draw!) who actually talk to each other and read test results and remember who I am from previous appointments. This is a huge improvement, but it doesn't really seem to be getting me any closer to a firm diagnosis, let alone treatment/cure. OH WELL.
Did I tell you guys about my recent favorite doctor comment? Post-heart-test, the cardiologist (not mine, just the one supervising the testing center that day) said, sort of angrily, "Well! This is bizarre! I've never seen anything like this before!" So at least I know I'm not boring them.
(current non-diagnostic diagnosis is "your autonomic nervous system doesn't work, but we don't really know why.")
IME if you badger them long enough, they'll sigh and prescribe Gabapentin for pretty much anything they don't understand.
So at least I know I'm not boring them.
That's always the crucial first step towards a cure if you actually are in an episode of House.
107.2: I kind of like that reaction, mostly because when I get angry at some new problem or riddle it likely means I'm going to become obsessed with it.
107: My orthopedist grandfather's goal in life was never to be interesting to a doctor, but that's not the sort of thing people get to choose. I'm sorry you're still stuck with all this confusion. I'm a big believer in knowing being better than not knowing in these sorts of things. El pez, thanks for keeping us updated on your thinking and background and I hope you also get some clarity!
97: HR did end up getting involved. I'm trying to figure out how I can convey the gist of what happened without typing a 5000 word comment. Let me try this.
Some people have responded with some shock at how my doctors have handled the medical stuff. The employment stuff is much worse. While it was happening I talked to a number of people about it, and the reaction from every person was some combination of shock/outrage/anger, and a comment along the lines of "That sounds illegal" or "you should talk to a lawyer".
By the time I'd left, my manager had mostly stopped talking directly to me and most communication went through (and I supposed was vetted by) HR.
Before my disability, I once asked someone why my manager was never in the same room as the other big manager in the office. Were they the same person? Nope! My manager would get too angry if they interacted, so they avoided each other. I was told that it was actually better than it used to be because they weren't literally never in the same room together, but there was a time when they actually could not ever be in the same room together. When I asked how long that had been going on, I was told that their "rivalry" predated their joining the company, which (IIRC) would have been six years ago at that point.
HR was ok with me working from home, but it didn't really seem working with this person who's unable to control their temper around people they're angry at and who holds grudges for 6+ years.
But, good news-ish from the psychologist. She was familiar with the horrible genetic thing. Because she specializes in pain stuff she's had multiple patients with that exact issue. She recommended someone local who's familiar with it, with the caveat that I'll need to get a referral from my doctor, so I'm trying to do that now.
112: That sounds illegal. You should talk to a lawyer. (But seriously. Not your lawyer, this isn't legal advice, and I generally think that suing anyone over anything is probably a mistake unless lawsuits are your hobby and the lawyering is free to you. But that sounds like it might easily be constructive discharge as a result of disability discrimination to me. And it sounds as if someone's going to sue them eventually.)
And hooray for the referral from your shrink. Here's hoping the specialist rules out the scary diagnosis from a position of knowledge.
107, 108: The DE was medically "interesting" and indeed I still have a ton of gabapentin around here somewhere. Besides the actual problems, the trouble with "interesting" is the vast number of tests the docs can come up with before nailing things down or giving up.
So. Good luck to you both.
Looks like I mangled my last sentence, but I think you get the idea. My thought then was that if I took legal action the best case would be that I'd add a bunch of stress to my life and be allowed to stay in this horrible work situation.
I suppose that if I did it now I wouldn't be in the work situation and maybe I could get some money out of it, but I'm not desperate for the money, and as you've said, being involved in a lawsuit sounds quite horrible.
The ADA doesn't let you sue for money, just for fixing whatever was discriminatory. Some states have much stronger laws; if you are in California you might be able to get enough money out of a lawsuit to make it worthwhile. But mostly I think talking about those laws is helpful for getting people to behave correctly because of the threat, or possibly for publicity and Theoretical Justice or something. Not for actually making your life better.
117: That sounds very sane to me.
118: The ADA doesn't let you sue for money, just for fixing whatever was discriminatory.
This is not accurate; there are circumstances where you can get damages under the ADA.
I would be very interested to learn more about that!
Not legal advice, but here's an EEOC page. Check out the last question on the page.
You're certainly right that local or state laws may be better -- in NY, and particularly in NYC, they're much better.
I wonder if you're thinking of some specific circumstance, and overgeneralized? I'm far from a guru on this stuff -- I look things up when I need to know them.
120, 122: probably thinking specifically of ADA retaliation claims--not quite settled yet but most courts say no money damages there. But you can definitely get damages (incl punitive, under the right circumstances) for discrimination and for failure to make a good faith effort at reasonable accommodation. And attorney's fees.
Yeah I think I was mixing up places of public accommodation with employers, probably. Also the large number of lawsuits I am familiar with where deaf people sue hospitals about interpreters and the only thing that ever seems to happen is that the court says "please get interpreters in the future."
Oh, that'd make sense. But even for retaliation, I'd say it's more up in the air than not quite settled -- I don't think there's a 2d Circuit case that analyzes it, but I'm pretty sure the 2d Circuit has upheld retaliation damages under the ADA. (Maybe I'm wrong, and the cases I'm thinking of were retaliation under the state Human Rights Law? But I don't think so.)
On the bit about publicity, I've been wondering how bad it would be for my career to blog about this experience (by which I mean the mysterious medical problems and the friction it caused with my previous manager). It's may seem a bit odd to mention blogging about this when I'm being anonymous here but I'm serious.
On the one hand, it will almost certainly cause me to lose some employment options.
But on the other hand, do I really want employment options like my last job? It seems like a decent filter for ruling out stuff like that. As long as the programmer bubble doesn't pop before I find a job, it shouldn't be a short-term problem.
A worry that I have is that if I blogged about it, it might blow up and become news. Not just something employers might be able to search for and people who have me in RSS would read, but something I'd read about on business insider. The cases I know of that became news all generated significant levels of harassment.
I know multiple people from my old company who have avoided taking legal action or publicly discussing blatantly illegal actions towards them to avoid career damage and other fallout.
Oh, in case it's not obvious, I'm not sure that my old company has an unusual level of harassment, discrimination, etc., but it's a big company and that kind of thing is probably common at most big companies.
Huh. Um, on most things I'd say let the chips fall where they may, but for this specifically -- you're in the kind of industry where people are going to google you before hiring you, this is specifically something that makes you sound like a 'difficult' employee -- I really wouldn't unless you very much wanted to. Hiring decisions go through a number of people and you only need one to torpedo you, which would mean that you might miss out on jobs where the actual people you were going to work with would be fine.
Like, if you were on a crusade to make sure people knew how awful the bad manager was as a matter of public service, and you explicitly thought it was worth the damage to your career, it might be worth it. But without a clear, important goal I really wouldn't.
Taking down someone's reputation would definitely not be a goal. I've written about technical and process failures before and, where possible, I've tried to anonymize things. I would almost certainly anonymize my manager's name and probably my company's name, too. A lot of people know where I worked, so that might be a bit pointless, though.
A goal might be to convey a message like "hey, look folks, sometimes people have terrible medical problems and it's not really visually obvious they're having problems, so maybe don't assume they're lying or otherwise acting in bad faith"
But yeah, good point on hiring decisions going through multiple people.
A goal might be to convey a message like "hey, look folks, sometimes people have terrible medical problems and it's not really visually obvious they're having problems, so maybe don't assume they're lying or otherwise acting in bad faith"
That's a good message to get out, certainly. Maybe write something up, and sit on it until you're indoors someplace else and things are going well, so you can close it off with "Of course, I'm successfully productive with my current managers, who deal with me reasonably and appropriately. Old job lost a good, useful employee by being pointlessly (and illegally, not that I sued) mean to me."
||
My boss asks me to ghost write lots of things for him--memos, emails, etc. Which is fine,--that's at least arguably within my job description, sort of. But as part of our annual performance reviews, everyone in the company is supposed to write a narrative annual self-assessment, and he just asked me to write a draft of his. That seems... inappropriate? Plus I have no fucking idea what to say. (I told him that and he said I should just give it a shot and see what I come up with.)
And you decided to outsource it to the Mineshaft! We're touched.
Jonas Salk would write "I fucked polio up a hole of my own making" for the rest of his life.
Michelle Obama, thanks for giving me a chance to explain why I said what I said about having a direct conversation about verbal boundaries with a mental health provider.
I know that it is very difficult to get oneself or another 'committed'. I know it's not like in the movies, and a lot of people have incorrect assumptions because of the movies. I've used mental health services with great results, and many providers are friends, people I trust and respect. I volunteer in the area when I can.
Three out of the four bad experiences I've had were very bad, and they were with people who were training. One was this past year, when feeling so at ease within the system that I was in retrospect cocky, I went for a session of "free therapy" with an MA student. I was in the building looking for a mediator, there were none on that day, but there was this training program going on and I (god this is embarassing to admit this) thought sure I could use a session, and I'll be a good person to practice on, it'll be a win-win.
It started out fine and went south fast and suddenly. I'd said something about being afraid of my ex. Whatever I said, however I said it, it was nothing I hadn't said before to at least two very experienced counsellors. Student informed me she was obliged to call Child and Family Services. Definitely not what I wanted, as I'd come in the building to get a mediator to help with the details of an amicable separation agreement. I let her know I didn't want this, but weirdly for me my voice was shaking. She left the room to check with someone, came back, wasn't budging. I said something containing "fuck." Quite possibly, "what the fuck?" Now she felt scared, she said. I was verbally attacking her. I can't tell you how weird and absurd this suddenly was. She left again to check, I went downstairs and talked to the admin, said "there's a situation here, and I need your help to diffuse it." She did, and nothing bad happened. I got an apology, and I apologised for saying "fuck". the poor kid cried. I expressed how I know what it's like to go live into practical work and how everybody has days like this. I said any nice thing I could think of.
I have never felt so aware of privilege. Privilege was a bit of a joke to me before this experience. But going downstairs to the admin, I knew I could say the right words (hoped I could) because I could guess the right words to stop a train wreck. (Not a train wreck that would have seen my kid taken away, but one that would have had serious consequences for the whole "amicable agreement" thing). The admin and I had chatted when I came in about the upcoming elections. The way I was dressed. That I've had enough therapy to know okay, this isn't supposed to be happening. But what if I'd been not just chronically broke but impoverished? Or addicted? Or in previous trouble with CFS? What if I didn't understand she was a student, or didn't understand that that meant I had power and didn't have to just sit there?
I'm a big fan of getting clear about words. I know it's very, very unlikely that something will go wrong, but there's nothing wrong with making it that much more unlikely.
And again, really sorry to hear about this, both pez and now Messily.
Hey, el pez. Here are my suggestions for getting a better medical team. Disclaimer is that I'm not a doctor, and that I've never had to do this when the stakes were high. I'm assuming you have some flexibility as far as health insurance, too. It sounds like you've basically figured this out, but I didn't want to underdeliver. First, your primary care provider should be an MD with a specialty in internal medicine, not general practice or primary care. I don't think DOs can specialize in internal medicine, but be sure you are seeing an MD, not a DO. Pick your favorite person on your current team and ask them who they'd see in your place, either specialist or primary. Sounds like you're already almost there with that. Something alng the lines of you feel like your doc isn't very responsive to your concerns and you'd like to get some fresh eyes looking at your files. Some docs just flip through a provider list and pick basically at random. When you get referred, try to ask whether they know the person.
Second, if you're able to check credentials as far as schools, be picky. Try to get someone who went to big name schools. Be a snob. My personal favorites are ones who (for example) got engineering degrees as undergrads and went to Johns Hopkins for the MD. When you see a doctor and you have an unusual constellation of symptoms, you should hear phrases like "I was researching your case" or "I was reading a journal and saw that . . ."
Third, jerks aren't necessarily good. I don't think there's much correlation between good people skills and good technical skills. Don't feel like you have to stick with someone abrasive or unsympathetic.
Fourth, a good doc will send you to specialists right away if there are experts in your area. However, if you don't get good referrals promptly with language like, "This guy is the best I know at autoimmune mysteries," ask whether there might be specialists at your nearest research hospital.
Fifth, if you aren't getting traction, you can often self-refer to really fancy places like Mayo. Better for your insurance if your doc refers you, usually, but there's no gatekeeping mechanism. You can usually search city+ "research hospital." Obviously, Mayo, Cleveland Clinic, Johns Hopkins, Emory, and so on are the kinds of places you want. If you're a true medical mystery, NIH has a program involving genetic sequencing, but I suspect you need something truly exotic to become part of that.
Sixth is timing to see new specialists. If you have a relatively open schedule, take the six months hence appointment, but call every couple weeks to ask whether they've had cancellations. It happens fairly often, and IME receptionists are poor at calling back if earlier spots open up and keeping a waitlist.
That's pretty much all my good advice. Most doctors are fine at what they do, but relatively unequipped to handle unusual cases. The good ones know to get a patient to someone who can help; the bad ones just kind of treat patients the best they can themselves. It sounds like you have about the right degree of skepticism, but there are docs out there who will at least give a fuck about what's going wrong and why. Everybody who says you don't want to be interesting is right, but it's better to have a doc who gets interested in what's wrong with you and whether there's anything they can do to help than one who doesn't.
And buckets of sympathy to E. Messily. I'm so sorry you're struggling. I hope if you do apply for disability that the bureaucracy at least gives you a break. You're karmically owed, I think.
el pez, good luck with everything, and please do talk to your friends when you're feeling hopeless. Not all of them will be able to help you, but some of them will.
E. Messily, I hope your situation improves! If the doctors can't make you well, can they at least help you find a new host body??
130. STRENGTHS. My greatest strength is my ability to delegate when appropriate. For example, I have delegated writing this self assessment to RR in the full confidence that he will make a better job of it than anyone else in the department.
"All matter in the universe experiences an attraction to me."
123: Suing under the ADA seems like it would make more sense if you had the kind of high-status, high-paying job where you would normally be accommodated because your skill set was in such high demand.
There was a successful case on that EEOC page (and I believe that they do the suing) about a woman with bipolar disorder who got fired from her job as a barista. I guess that she struggled with certain aspects of multi-tasking, but she had been a successful employee for a long time when her supervisor modified the job slightly and gave her coaching. The new supervisor refused to do that, started writing her up and fired her.
She got some money, some years worth of salary, but it wasn't like she could retire off of it, so the question is: did she get known as the person who caused trouble by suing. And how would that affect her future job prospects?
141 also to 118, 119, 120 and 121.
a new host body
It should be ready any day now. Just waiting for it to finish hatching.
(also I was coming here to write the same joke as chris y in 139. Good job, chris y.)
I want RR to write the equivalent of a carefully worded rec letter. In the style of "You would be lucky to get [name] to work for you."
I mean, I don't want RR to be fired, but I can imagine a fun writing process.
My personal favorites are ones who (for example) got engineering degrees as undergrads and went to Johns Hopkins for the MD.
Ha. I am . . . the opposite? I look for people with undergrad degrees in the humanities. My doctor was a philosophy major at the U of C. O's was an English major at Middlebury.
I basically like anyone who didn't take the typical path. The standard biology major is basically the easiest/fewest class route to an MD, so anyone who didn't follow the path of least resistance is probably a better thinker. The smartest doc I've had for a low-grade mystery ailment was an electrical engineering major, so that's why that was my example. I'd take humanities, too!
145: I'm talking out of my ass here, because I know almost nothing about philosophy, but it seems like it's the mother of all the disciplines. Economics was part of philosophy once upon a time, before people decided it was "useful". Natural sciences were natural philosophy etc. I feel like people who study philosophy combine both the skills of the humanities and the sciences. (a humance, as it were).
146: In England, I guess you would have to look at their GCSEs (or whatever they have now), because most of them are doing medical school as undergrads.
...but it seems like it's the mother of all the disciplines.
I've certainly met philosophers who think they can drop into any discipline without any knowledge of the field and make profound pronouncements that everyone needs to listen to. OTOH I've also met a philosopher who dropped into neuroscience, devoured the background material, and was publishing in Nature within a couple of years.
I've certainly met philosophers who think they can drop into any discipline without any knowledge of the field and make profound pronouncements that everyone needs to listen to.
One has met engineers of this persuasion too.
152-154 are correct. Kill them all. God will know his own.
My policy when dealing with doctors is to remind myself that almost all of them were once pre-meds.
And anyone with an internet connection
159 is the sort of thinking that leads to never seeing the doctor.
"Doctor and lawyers are exactly as good at their jobs as you are at yours."
If y'all want more data, I saw a new psychologist this morning, and I asked her what would prompt her to intervene in some extraordinary way. She said if someone said they had a definite plan to kill themselves, including the means and the time they intended to do it, and could not be persuaded to relent or postpone, she would call the police. She said this has come up twice in her career (she's older, so she's presumably seen a lot of people). Once a patient said she intended to leave the office and kill herself, and the psychologist didn't call the police, but did lock her in the building (the office had a key lock that faced the inside so she could take the key out of the lock and prevent her from leaving) until she was convinced her patient was more stable. On another occasion, she said, a patient called her and said she was waiting for her exboyfriend with a knife. The psychologist then called the police.
I don't doubt anyone's "this idiot therapist did an idiot thing" story. There are plenty of bad therapists in the world. I just think it's counterproductive to discourage people from talking about their suicidal thoughts with their therapist because it might get them put in the hospital for two days. My experience of the world suggests that risk is quite low if you aren't saying the things that usually mean you really are at imminent risk for trying to commit suicide. Concealing thoughts of suicide from your therapist also carries some very severe downside risk. Of course understanding the boundaries of the person you're dealing with is great, in all kinds of situations, and there's no reason not to put your mind at ease by asking.
I once made an off-hand comment to a psychiatrist that could have been interpreted as suicidal ideation, though it didn't reflect any actual intent to kill myself (it was along the lines of "Sometimes I think it would be better if I just got run over by a bus."). She immediately called me and asked if I was contemplating self-harm, and when I said no, asked me to promise her I wasn't going to kill myself. And she left it at that. Which struck me at the time as exactly the right way to handle it.
From what little I know about this I think there's a greater danger of involuntary commitment from non-mental health specialists than therapists or psychiatrists. I remember hearing a doctor working in emergency medicine talking about how quickly he would pull the trigger on the weekend-in-the-locked-ward option when faced with people who seemed like they might be having mental health issues. (As in, I mean, when dealing with people who weren't obviously in the emergency room for suicide related reasons.) I suspect there was a decent amount of casual-exaggeration-for-defensiveness-reasons in his "oh yeah I do that all the time - if someone seems like they're irrational/unreasonable in an abnormal way then poof! they're spending the weekend here" description, but not necessarily that much. (This may also be related to the fact that therapists and emergency room doctors tend to see different (socio-economic) groups when it comes to mentally unhealthy people too.
Best response I've had was "Go back downstairs" from the medical corps shrink I was sent to during my draft physical in 1961. I had checked the "Yes" box for "Have you ever thought of committing suicide?". He asked me the question again and I responded with "Doesn't everyone?". That was the end of it.
130. STRENGTHS. My greatest strength is my ability to delegate when appropriate. For example, I have delegated writing this self assessment to RR in the full confidence that he will make a better job of it than anyone else in the department.
WEAKNESSES: Not paying RR enough.
"My greatest strength is in my pelvic floor. On one occasion I was able to break a pencil into four separate parts."
Note: works fine if your boss is a woman, but is far better if he is a man.
136: Thanks! Oddly enough, my physical therapist has been the most effective person I've seen for this. She's fixed a number of old nagging pains that other physical therapists hadn't been able to budge, when I had a multiple month wait to see an ortho specialist she called someone and got that wait time reduced to a couple weeks, etc.
You'd probably like her background. She's a mechanical engineering PhD who also has PT credentials. She does research at the local university related to the mechanics of the human body. I'm not sure why she's available for PT a couple days a week. Is that a requirement of her research gig or is it just something she likes to do?
I'm currently in the middle of step four (I wish I did this half a year ago or maybe even a year ago), and I'll go to step five if step four doesn't pan out. I'm normally much more active about medical stuff but I think I coasted this time because of a combination of stress from my manager and from stress from the actual problem itself. This thread was a good kick in the pants.
To reply to some older bit of this thread, I should give acupuncture a shot. I haven't looked into this for a long time, but my vague and probably somewhat wrong recollection of the studies is that acupuncture does better than traditional placebos. However, when the placebo is something acupuncture like, but with the needles in the wrong locations and not maybe not even administered "correctly", acupuncture does not do better than placebo. So it seems like there's something about getting poked with needles that is helpful, but the explanations about chi and acupuncture points might be bogus.
It's also about as effective as placebo needles (that is, something that feels a little like the needle going in but in fact there is no needle/piercing of the skin going on). That's the one that really causes the trouble for a lot of speculative "here's why accupuncture works" type explanations.
I suspect that like with a lot of these therapies the real effectiveness lies somewhere with "someone acting reassuring touches you" and "you have to lie there still for a bit relaxing but also you feel like you're doing something to address your problems", both of which would tend to make people feel a little better about stuff.
170.1: That's called homeopathic acupuncture.
I had a bunch of PT and found "dry needling," which is acupuncture without acupuncture woo and without the needles spending much time in the affected region, very helpful.
If your problem is autoimmune or has led to muscle groups being constantly tense, either acupuncture or this PT-administered similar practice might help.
It sounds like I should just get one of those needly desk toys from Spencer's and play with it for a while.
But I suppose I can also look into this dry needling thing.
169.1&2: You're welcome. Like I said, it sounded like you mostly knew. Glad you're freling up to a round of trying to get answers. Most medical researchers who are interested in treating patients (some are not) do a few mornings or afternoons a week in clinic. I think it's a combination of wanting to stay fresh in terms of actual patient care, liking the break from routine, and honestly enjoying the helping profession part of the job. I imagine she probably oversees research but doesn't actually see patients in her normal position. In situations I'm familiar with, it's not a requirement, more like a work release.
111, and others: Thanks. I'll try to remember to post a pezindential update at some point in the future. I am hoping that the update is not about how my body is falling apart and all my job leads disappeared when I told them that I have this medical problem.
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