Disability Hearing: I don’t even know where to begin. Yikes.

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judgeLet’s just say that I am extremely grateful to have made it as far as I have. I would be a much bigger mess if it wasn’t for the state and county programs in Utah and California that help out people with mental health issues.

I’m also grateful for the help my parents have given me. However stressful it has been to have to rely on them (especially my step mother, who does seem to try sometimes), it would have been a lot more stressful to have had to figure out what to do on my own. I have a friend who recently moved into (then quickly out of, thanks to friends) housing recommended by the state that turned out to be a crack house. There was crack and meth galore, and he had to sleep with his phone under his pillow and his wallet in his pocket. Life is not easy for those with mental health issues who can’t work and don’t have family support.

So, I made it the almost three year wait to my disability hearing. And aunt, a cousin, and a friend/roommate were all there for me: and of course my lawyer, who I felt was capable and understanding. Such a blessing. I found my lawyer through another friend who works for the firm.

The judge seemed very judge-like: on her toes, intellectually astute, and thankfully for me, a wise listener. I just hope I chose to share the right things when they asked me questions. I keep going over it and wishing I’d clarified things more. The Vocational Expert also seemed kind and astute, but quite a bit at the mercy of the Medical Expert, who frankly scared the heck out of me.

So, my lawyer thinks that things ended up well (I hope!!!) but the middle of the hearing I was absolutely sure we’d end up having to appeal. So, why is it that so many people who truly qualify for disability and can’t work end up getting denied? I couldn’t tell you for sure, but I can relate this small experience that could possibly show some of the reasons why.

The Medical Expert (not sure if that’s the exact term, but it will work for me for now) seemed “nice” enough and has probably had a good enough career helping people out. However, when it came to reading and understanding the 20 years of medical notes from my doctors, he seemed to take soooooooooooooo much out of context. And I was supposed to be quiet, of course (probably best that way, protocol for good reasons etc.) but then by the time it was my turn there was no way I could correct every bit of misinterpretation of my records from him. I felt “ready” for the hearing, but even I don’t remember everything from the last year of my life that I told my doctors that could be misinterpreted. So, here I’ll try to clarify a few things he said:

  1. First of all, I’m not sure why he decided to rank my ability to do certain tasks and work so much higher than the doctor did that I’m seeing right now. Really, who knows me better? My own doctor, or this expert who sees me for one hour during the hearing?
  2. He kept noting my excellent social skills, from evidence in his notes. So what if I can lead music and lead a congregation in hymns at church? Did he read the months worth of notes about all the church I had to miss and how they had to have several people ready in case I couldn’t make it? So, the efforts of my bishop and the ward music coordinator to help keep me feeling like I had some use in the world somehow prove that I’m capable even 80% of the time?
  3. “She was even in a choir.” Yes. So, the choir I’ve done on and off here and in CA (several seasons) but have had to drop out of counts as the ability to work, especially since it was only once a week for three hours, and I couldn’t make it often enough anyway due to health issues?
  4. “She talks about taking a 6 week class through NAMI.” Yes, the 6 week class, once a week, for the National Alliance on Mental Illness that I haven’t been well enough to take? There isn’t anything that I can guarantee that I can make it to.
  5. He was very big on my having adequate social skills and “two blogs.” The two blogs are my “something to do” that I can do at any time of day or night that help me feel needed and….give me something to do. But I can’t consistently commit to anything due to my health. So, when I’m not feeling disoriented and I’m at home, just what am I allowed to do that doesn’t show that I can work? And my social skills: they don’t help me when I have tremors and can’t speak. At the many jobs I’ve tried to do because I was determined to be able to work I kept getting concerned coworkers and bosses and customers (when that applied) wondering why on earth I was trying to work. I swear that it is those who try the hardest who end up getting the most shafted because we show a “willingness to work.” Even if I had to stop working every time I tried. And I kept trying again because I thought…maybe with this new med or this new doctor now that I’ve moved I’ll be okay.
  6. I showed a “willingness to travel” because I go to see my kids in California. This one is just unacceptable. Do I have to be comatose before I “can’t work?” When I’m in CA I have the same symptoms that I do here. Also, I have to be careful who I get a ride with because they need to be understanding about my sensitivity to sounds (keeping the radio down) etc. Sounds obvious, but it’s not always easy to find a ride just when I need one and when I’m feeling okay.
  7. This one I understand: he wondered why I hadn’t spent time in the hospital or ER. Thankfully I knew how to respond. About 7-8 years ago I did have to go to the ER, about 4 different times. It was either over issues with medication or uncontrollable shaking and an inability to take care of myself. I’ve learned a lot of shortcuts to help prevent it now, but I’ve felt probably half a dozen times in the past 2-3 years like I needed to go, but I knew what the bills would be like. I’ve struggled for periods of at least a week or two. But I have a really, really good support network. I call friends or (LDS things: visiting teachers, home teachers….ways we have in our church of taking care of each other) and they bring food and sit and talk with me until the stuttering stops. I sleep for several days until I’m better. I’ve heard a lot of stories as to what mental hospitals are like, and I talk with my doctor and bishop, “will that really help?” because some are better than others.  I don’t have voices that talk to me, so I don’t really need people hovering over me, but there’s no use sleeping a bunch somewhere else with strangers when I can sleep at home. And I know they’ll just give me an Ativan at the E.R., which helps in the short run but not in the long.
  8. There are so many treatments I could get if they give me disability (ones I could pay for with my back disability pay) that I can’t right now. I’ve been researching some of these for years, and other more recently, but I feel like if I get this help I can actually do something about my PTSD. This is a mental illness that doesn’t have to last forever: my doctors agree on that. But if I’m constantly in this state of waiting to possibly be dropped by the side of the road, I don’t see how that can happen.

Venting over. Who knows how I’d do if I had to evaluate anyone from a big stack of notes. I think it’s more the process that I’m not understanding at the moment. Should I have subpoenaed my doctor? Would that have helped? In any case, the judge didn’t seem to agree with the Expert so she kept questioning until he had put my ratings more towards “can’t work.” And I suppose this sort of thing would be scary no matter what. I’m rather grateful for the judge and my lawyer. My lawyer knew just what questions to ask me so I could share my story/symptoms better than what the Expert was representing. Hopefully it will go okay and I won’t have to appeal. Thank goodness for lawyers.

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About pickleclub1971

I'm a single mom of 2: a Southern CA native, who transplanted to Utah 4 years ago. I have one 18 year old who is off to the Ivy League, and one 14 year old who is in high school. I served an LDS Mission to Southern France and I’ve also lived in the San Francisco Bay Area, Idaho, Northern Arizona, and New Hampshire. I love 80’s music, classical music, choral music, playing the piano, singing, speaking what French I still remember, and talking about history and music with whomever will listen. I love that my kids are better at math than I was at their age. (But they still get frequent historical references from me…anyone familiar with Ducky from NCIS? He’s that kind of medical examiner, I’m that kind of mom.) My kids also think I know all the lyrics to all the songs from the 80’s, mainly because I’m good at making them up and faking it when I don’t know. Sometimes they catch me. I’m currently disabled with PTSD (Post Traumatic Stress Disorder). I want to get better (of course) and be an advocate for trauma survivors and others with mental illnesses. I like people in general. I suffer from the delusion that I can make everyone my friend, but of course that isn’t possible: but I still believe that the world can be a better place.

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