huge reality check

I just spent the better part of the day reviewing most of my medical files from social security. wow… I was (am?) really fucked-up. I’m seriously questioning 1) how I am still alive to this day, 2) why in the world my wife stayed with me, 3) if there’s ever a possibility of getting better for real… I mean, I can’t tell you how many times my records noted what a hopeless cause I was, and how I am destined to this struggle forever. And it wasn’t just one provider, it was almost all of them… I was hospitalized over 21 times (if my count is correct), 15 of which happened in the span of a year and a half. I’ve been tried on 30+ meds (with varying degrees of success or failure). I know some of the records are not consistent from page one to page two, but most of them concur on 3 major diagnoses (depression, bpd, ptsd), and my prognosis (utterly hopeless)… o_O  I think I am the definition of a “lost cause”. I’m really glad I will be seeing TL tomorrow, though this wasn’t what I had in mind to talk to her about. I think it’s only fair to warn her how futile it all is though, so she doesn’t put much effort into this only to start pulling her hair out in a few weeks… wow… yeah. There’s still some records not included in their files, but it’s not much. The sad part is, I was dissociating for so much of that time. There are several hospitalizations I don’t recall ever occurring… now I’m sitting here a bit shell-shocked. I had known much of it was going to be bad, but didn’t realize quite how much of it, and quite how bad.


3 responses to “huge reality check

  • andreabehindglass

    I am so sorry your notes came back like this! I am also shocked and vexed that any of these people would write anything suggesting you are a “lost cause”. Although I don’t have PTSD, as far as I’m aware, none of your diagnoses are “lost cause” illnesses: Certainly, depression largely occurs on short-term levels, and all statistics I’ve seen for BPD indicate that a high proportion of people recover. From here, you come across as a very strong person, battling with a lot of past demons, often in difficult current circumstances–but you are battling, and you have kept them at bay as much as anyone could. You show a lot of strength. Maybe over the time in question, things were very unstable in your life? Maybe it was just a really bad point in the natural progression of those illnesses? A year and a half isn’t really all that long. I really cannot see why you would be labelled a “lost cause”, and I can’t see that this unnecessary and absurd prognosis could be deemed helpful to your treatment at all. Maybe if they stopped labelling you like this and sat and planned a supportive treatment plan, in which you don’t have to lose therapists after you’ve worked so hard to build trusting relationships with them, or considered the right kind of treatment for you–I’m not sure there’s any evidence that pills help with BPD: Why blame you for the failure of medications that had no reason to help in the first place?
    Anyway, I really hope my comment doesn’t make things any worse for you. I just feel like this is very unfair on you, and you don’t deserve or need judgements like that. I hope you feel better soon.

    • Samantha Jane

      Thank you… I had this whole other response written out, but when I moved my phone had an “etch-a-sketch” moment and erased the whole thing.
      I had tried to say that most of the “lost cause” prognoses came from the hospitals. The last therapist I had up north maintains that she will take me back after I return to the area. I respect her opinion very much, so that’s one huge and heavy vote for “not hopeless”.
      I’m also quite aware that many of the records were not consistent in either my diagnosis or my presentation from one paragraph to the next. Several of them seemed to simple have “cut and pasted” the notes. There were factual inconsistencies in many of them, which speaks either to my utter confusion (though only some notes actually mention that I seemed confused), or to their lack of accurate note-taking. One discharge summary says that my boyfriend tried to kill himself after I broke the relationship off. Later in the note, it said I was in an on-again off-again relationship with my wife. By that time, I was very much a lesbian and very much had not had a boyfriend for over 10 years. Also, none of my ex’s ever attempted suicide to my knowledge (that was all me)…
      I’m also trying to keep in mind that all this happened in very concentrated intervals of time.
      There’s no records from the one place where I markedly improved after all this (the trauma center I attended). It seems they never passed on the information to the SSA, so there’s no real positives other than the letter from one of my favorite therapists.
      And reading the notes from my first therapist in this area have me a mixed impression, though it validated my experiences with how frustrating it is to be able to access services in this area…
      Overall the records were just sobering, not so much depressing. I am reminded of how much that span of time sucked, and how much I don’t ever want to return to that head-space.
      Thank you again for your kind words. They were nice to wake up to this morning. 🙂

      • andreabehindglass

        I hate typing on phones–I always manage to lose the text or not be able to put the cursor in the right place. I think you’re absolutely right, and it gave me great relief to read your comment. Your therapist up north knows you and has worked with you: It’s a big investment of her time, so the fact that she feels its worth it means a lot. It sounds very much like the people at the hospitals didn’t bother paying a huge amount of attention to your life and needs, which, sadly, doesn’t surprise me. It is also very bad that the notes from the trauma centre aren’t there–It seems very wrong for them to have some notes, but not others, especially considering the bias.
        Thank you for your reply. It is very good to know this more complete picture and the positive way in which you are dealing with it. Take care.

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