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

Let’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.

On a scale of 1 to 10…

I’ve discovered that there’s sometimes still a large disconnect between what some of the people who “know” me think I’m going through, and what I’m actually going through.

Have you ever been asked by a doctor how severe the pain is that you’re going through, on a scale of 1 to 10, or 1 to 100? I finally got the courage to ask one time, “So, what is 10? Is 10 going through labor? Because it’s bad, but it’s not that bad.”  I’m still not sure how to do that with friends, or when it’s even worth it. I have just a few friends that I will try to further explain it, because they’re the friends who have felt comfortable in the past asking for more details, and who seems to mostly “get it” even if they haven’t been through it. I learned the hard way, at a more needy time of my life, that even if I think someone who absolutely doesn’t get it and doesn’t seem to want to, even if they ask me questions, I probably won’t be able to ever talk or explain enough. They’re probably not emotionally ready, and I’ll just end up getting hurt, and maybe they will, too.

I still haven’t figured out the pain scale. Doctors seem to be able to figure out what they need to without me trying to gain clarity for myself.

As for my anxiety, thus far the “10” (and worst) for me was the time I had to go to the E.R. My doctor and therapist know what that means. I don’t think that many people have seen a panic attack that’s that bad, though.

So, a couple of people asked me what it was that keeps me from church sometimes. (I feel a little vulnerable on this one, for some reason, despite the irony of writing it on a blog where I’ve already revealed quite a bit.) Usually, it’s that my anxiety is so bad that my nightmares have kept me from sleeping very well and I can’t wake up. If I can wake up, it’s more tricky. I’m more likely to go to church, but nervous about how I’ll be able to handle it. Last week I managed, but I had to miss a lot because I had to sit outside of Sacrament Meeting and Relief Society because the noise and crowds were too much. This week, I managed to sit outside Sacrament Meeting okay, but by Relief Society, I just needed to lie down. Some people may think, “oh, just do some breathing techniques” or one of the many other things I’ve learned. Those things help me on a regular Sunday, or in the long run, but when my anxiety is hitting a 7 or 8 (nothing most people ever have to deal with, I don’t think) that’s not going to do it. As I said to a friend, “If you had the flu, and weren’t retaining anything you heard, and all you could think about was lying down so you could calm down and get some sleep, would you stay?” Also, I DON’T LIKE missing things. Yes, I do get embarrassed if I start to twitch or I feel stuck somewhere and my mind is about to turn off because I keep trying and trying to do calming techniques and it’s not working, because I’m “running faster than I have strength.” No one was ever promised that none of us would have to deal with a difficult mental illness in this life. I don’t want to make people have to see it. It makes people uncomfortable. On top of that (and probably more important) is that it will keep getting worse until I find a way to calm down, and sometimes the only way to do that is to be able to lie down in a quiet room, by myself, where I know no one will bother me. 

I had to ask a friend to take me home early on Sunday. It was quite a bit out of her way to drive several miles to drop me off, go back to church, then come home again this way. It was extremely kind of her. When I got home, I said, “I don’t want to be here, but I need the rest. But this means I’m missing church again.”

What did I learn from this that I need to work on? I took a long nap on Saturday afternoon, that ended up being full of nightmares and thus not restful at all. I ended up afraid to go to bed on Saturday. I need to try to go to bed earlier on Saturday nights, and learn not to be afraid. Plenty of techniques I can use with that.

I understand those who mean well who think one or two simple things, applied daily, will fix all this. It’s just not that simple. It’s more like a very long list of things that will possibly work, as I go through it and pray about it and talk with my doctor and my therapist etc., will fix this. Please don’t insult the intelligence or the integrity (even if we’re not perfect….I know I’m not) of those of us dealing with serious mental health issues. And obviously I don’t have it as bad as a lot of people: no hallucinating, no long stays (or even short ones) in the mental hospital. But getting over my PTSD is like having a full-time job: but one with odd hours and no sure answers. The answers are looking a lot better than they were 5,10,20 years ago, but one of the biggest battles is yet around the still elusive corner: (will I get approved for disability?)