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The Road from Here to There - Part 12 12-09-2011 10:44 am MindWithoutWalls's Blog
Post Assessment - The Follow-Up Doctor's Appointment
Last spring, I mentioned to my doctor that I thought getting assessed would be a good idea, and I told her why. Back then, I had much less to go on and only a vague suspicion that I might have some mild form of autism. She was fine with my plan, and we scheduled a follow-up appointment intended to occur post-assessment. Then I had to keep rescheduling all summer and into the fall, as I searched and searched for a place where I could go. I finally got to have my follow-up this past Wednesday.
After mentioning a couple of unrelated current health concerns, I began to tell the doctor about my assessment experience. I told her I thought the evaluation hadn't been conducted properly and why it seemed that way to me. I also told her about the psychologist's conclusion, including the part about my being gay and a "cross-dresser". As I recounted this part of the summation appointment, her mouth dropped open, and she kept shaking her head a little back and forth from time to time, with her eyes wide. It was a little disturbing looking, and I was nervous, but I've seen this sort of thing before. I hung tight and finished my story. When I was done, she said she didn't even know how to begin to tell me where to go from there. My guess is this: she's no stranger to racial prejudice and stereotype-inspired attitudes and behavior, and she knows history. She's also progressively minded about gays and modes of gender identity and expression. So, she was with me at that point. (I like this doctor.) Unfortunately, all she could recommend was that I get a second opinion. Well, good call, but we'll see what Medicaid will cover, as I've already noted. So, that was not a new idea for me, but it did show she realized I might be right that things had gone wrong.
Continuing on with our talk, things were complicated by the fact that I kept going back and forth between referring to my fibromyalgia and referring to my possible Asperger's without clarifying which I was talking about at any given moment. I only realized I was doing this because she kept having to periodically ask which it was. Even having her call my attention to it didn't seem to help much. I just wasn't getting it together on that part very well. I knew what I meant, but that didn't mean she did. I'm guessing that wasn't terribly comfortable for either of us.
My next move was to give her my lists of why I think I have Asperger's and why I think a proper assessment and diagnosis are important for me. That was fine, but then I hit a snag. I ended up not submitting the written report for my records, because I was afraid that it would get me kicked off my disability benefits. The problem is the part where, after evaluating me so inadequately and being so dismissive of both my concerns about having Asperger's and my fibromyalgia (which is documented as a disabling condition, which he is not qualified to assess, and which he did not even try to assess me for anyway), the psychologist recommended that I get a job that I could perform in spite of my physical limitations (which he clearly didn't understand well enough to know if it were possible to find such a job, given the broad way in which my fibromyalgia affects me). I could just imagine a case worker, looking for any excuse to boot me off my benefits, latching onto that one thing and disregarding everything else in my records. With all the trouble I have managing in life anyway, the idea that I could be thrown back into the workforce to drown scares the hell out of me. How am I supposed to function there? And that's without taking into consideration the Asperger's, which he clearly never had any intention of even considering that I might have.
As soon as we got to that point in the discussion, things began to deteriorate. In all fairness, the doctor was right to point out that there are people with fibromyalgia and people with Asperger's who work, so simply having either of those is not, in and of itself, a strong enough argument against employability. There are also people who have one or the other severely enough in some way so that they can't work, too, so it's not automatically an inadequate reason, either. But I also haven't seen her enough times for her to feel she knows enough to say if my fibromyalgia keeps me from working, though previous doctors have made that conclusion and supported my disability claim. She was also correct to point out that my belief that I have Asperger's is not the same as having a professional opinion to that effect. Lay people self-diagnosing is not always such a good thing (though my girlfriend did note that there's a reason for that Mystery Diagnosis show about people who know something is wrong and have trouble being believed). I was previously aware of all this. As with the idea that I need to get a second opinion, this was nothing new or terribly different from what I could've expected. But the result was that I gave her neither the written report nor my detailed rebuttal of it. I also ended up not bothering with the most recent blog entries, which explained my reaction to the summation appointment. The down side is that she can only take my word for what the psychologist said, because she doesn't have it in writing. Also, because I blurted out my worry over the work issue, she may be putting that in her notes, so it'll then be in my record anyway. I now feel like I've been screwed twice: once by the report and once by my poor handling of the discussion about it. I shouldn't even have mentioned the written report. I wasn't required to. It would've been enough to just tell her what had happened in the appointments and left out the written report entirely. None of this is her fault.
This turned out to be more of a struggle for me than I'd expected. I've come to feel that, the more I try to give clear, accurate information, the less I'm believed. It's kind of like telling someone you've been sexually harassed and finding that, the more you try to get across what's happened to you, the more the other person doubts you and dismisses you as hysterical.
By the end of the doctor's appointment, I was so wound up that I felt the same way as at the end of an assessment appointment. She gave me the usual obligatory listen to my heart and lungs, and I was out of there. Then I had to think of what to do next. It was past my girlfriend's lunch break, and the doctor's office wasn't near there. Also, this was the night she'd be going to a class, so I wouldn't even see her at the usual time that evening. I opted for dropping by my younger sister's house. It's kind of on the way home for me. When I arrived, though, there were a couple of cars there. She apparently had company. I hesitated, drove past the house, came back, and decided to try anyway. I held it together for the little bit of time her guests were still there, correctly assuming that they weren't staying past 3:00. Then she and I had a chance to talk.
My younger sister's help and understanding is another pillar of phenomenal support I have during this process. She didn't just say the things that got me started on this journey. She's really been there for me when I've needed her. That evening, she was very reassuring, and she really put me much more at ease. She read my lists, my blog entries, and the written report. She knows my girlfriend well enough to have been able to picture her and hear her voice in her head as she read the words in my blog that I'd written my girlfriend had said, which gave her a chuckle. She thinks my girlfriend is awesome! My sister and I agreed to share lists of resources, such as books, films, and Websites, so that we would have as much information in common as is reasonably possible. She also agreed to be the one to explain all this to my older sister. This keeps me from having to say everything twice. It also saves me from having to deal with it if she has trouble understanding all this. My older sister doesn't know as much about autism generally, let alone Asperger's specifically, and it may be hard for her to believe what's going on. My younger sister knows much more and will be able to figure out how to approach this with her and how to field her questions. Unlike me, my younger sister won't get flustered, and she won't have things complicated by having to deal with the emotional aspect of it being something that's happening directly to her. It's less stressful to explain a thing that's happening to someone else. She won't have to deal with the same personal sense of confrontation. Bless her heart for handling this for me!
I ended up staying for dinner and then for a while after that. By the time I was tired and came home, I was doing a lot better. It was late when my girlfriend finally arrived, and she was very tired. I told her a little about my day, and she went to bed. My anxiety level has been a little up and down since that day, but I'm okay. I just have to keep going from here. There's got to be some place that will actually do a real autism assessment. I can only hope I can find that place and that either Medicaid will still cover it or it will be free for some reason, such as that they're doing a study. I'll keep looking. My doctor wants to see me again in six months. I'm hoping I can have this settled properly by then. If so, I shouldn't have any trouble over the work issue. Either it'll be understood that I can't work, or, if it's possible that I can, the things that it would take - meaning dealing directly with whatever Asperger's related issues I might have - will be clearly identified so that I won't just be thrown out there with no way to cope. I'll get help first, then we'll see how much of a difference it can make and whether or not it makes gainful employment manageable for me. No more uninformed supposition. I'm sick of that!
I would hate to agree with your doctor, but I think she is right on the count of that you are capable of work, you just haven't found the right vocation or workplace to allow you to thrive.
I thought I was awful and stupid and that I would never be able to keep at a workplace; I was always miserable, used to get bullied by bosses and co-workers, and always had misunderstandings with superiors at work.
However, once I realised that working in pubs and with the public (social!!!) was totally and utterly wrong for me and after going through years of mental health hell I would rather not go into here I have finally found where I "fit" in the working world.
I am not trying to say that I know you (coz I don't!) and I really hope I am not coming across as judgemental. I just wanted to say that you come over as very intelligent in your blogs and I am sure that when the right time comes and you are ready, something fabulous will find you and you will fly! My work is on a self-employed basis and that helps to curb a lot of my work-related anxiety. Also I think people who are "weird" or "eccentric" might be drawn to the area I work in so it's easier to actually BE at work coz the conversations and people's clothes are things I can fit into without feeling on edge the whole time.
Look for the square hole rather than stressing yourself out coz you're not a round peg! :)
12-12-2011 07:22 am Mishmash
All this talk about work is missing something vital: My disability claim is about my fibromyalgia, not the possibility that I might have Asperger's. I'm not trying to use an Asperger's claim to get out of work. I can't even think that far ahead about how it will impact my ability to work, given the state of limbo I'm in regarding diagnosis, though I don't think having it will make the possibility of work any better. The real problem is that I have days when I can't get out of bed in the morning or when I have to go back to bed later on. I can't tell when those days will be or how much I'll be capable of on a given day, even if I can get up and stay out of bed, because my fatigue can often be debilitating, and I'm unable to be consistent with my ability to function. (My sister, the nurse, has a friend who can't work for the same reason, so I'm not the only one.) And that's totally apart from my pain issues. I left work for physical reasons, even though I had a couple of jobs where I could work mostly alone and wasn't bullied. Even being self-employed depends on being able to function well enough often enough to do enough work to make a living. My grandfather was self-employed, so I do know something of what that takes. And no employer will want to hire someone who frequently and unexpectedly can't be there or has to go home in the middle of a shift, even for part time. My girlfriend and I have been over and over this, not because she argued that I should work, but because I was asking what she thought whenever I got too much stress over whatever Social Security was putting me through lately. She's very level-headed, and we had some really serious discussions in which we felt we had to be very realistic about things.
I had no trouble over the issue of whether or not I could work until after my mother died. Before then, I had doctors who saw me repeatedly and were familiar with my case. They were the ones who said I couldn't work, and the doctors Social Security sent me to for case reviews didn't dispute that. But after my mother died, my grandmother sent me money to cover expenses. She sent some to my sisters, too. We put it, and some more of our own, towards cemetery costs, which meant all three of us each spent more than we were given. I legally had to report that I'd gotten the money, but the law on this is that SSI couldn't deduct it from my benefits, because it was all spent on covering expenses associated with my mother's death. My worker took it out anyway, and I had to fight to get it back. She denied the regulation said what it did right up until I quoted it, verbatim. Then she relented and put the money back.
After that, the next time my case was reviewed, I got booted off my benefits. Reasons given were strange, unreasonable things, like their claim that I could lift 50 lbs. occasionally, over the course of a day. In the end, on appeal, I had to go to a hearing. The hearing officer thought my case was so clear cut that she reinstated my benefits in only two weeks. (That's even less than the three she thought it would take for the whole thing to come through.) So, she had no doubt I needed my benefits.
Everything was okay again for a while, but then I saw a new doctor. (I went to a place that had some turnover.) I went in to see her only once. I needed a note to be excused from jury duty, because, for the first time in my life, I wasn't confident that I could even sit in a chair and not have "mind fog", fatigue, and distracting pain long enough for it to be fair for me to participate in the trial. (I'd gone in to serve before, but my number never got called, so I've never actually done it.) She wrote me the note, but she spent the whole rest of the visit pushing me to take Lyrica and ignoring my explanation of how badly I react to medications. (Lyrica was developed as anti-seizure medicine, btw. It's not lightweight stuff, and I suspect it's dangerous. My uncle took anti-seizure medicine for pain, and he committed suicide on it. That's one of the known risks of taking it.) Then she wrote in my note that she thought my condition was going to improve. This was after seeing me once and not actually examining me or discussing much how fibromyalgia impacts my life. It was all about pushing the drug.
Ever since then, I've had doctors tell me they don't know me well enough to say if I can work or not, but they don't do anything to determine that or refer me anywhere that will. They keep saying they'll do it next time my case review comes up. But I have no way of knowing if that will actually happen in time, because I have no knowledge of the amount of time it will take to get an appointment, once I know I need one, versus how long my case review will take. So, I feel like I've been left hanging.
So, the upshot of all of this is that doctors who knew me said they knew I couldn't work, then one who saw me once said I would be able to in time, and now doctors who continue to see me repeatedly say they don't know. But then, how could the one who saw me once know one way or the other? Does she have a crystal ball?
Sure, I've had tough times in life. But this thing of not getting heard by professionals enough for them to even check things out is really unusual for me - or at least it was in the past. Now it seems like a thing I'd better get used to.
12-13-2011 05:05 pm MindWithoutWalls
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