I’m facing a decision and I have to make up my mind within two weeks: do I tell my doctors the truth about how well I’m doing on my meds? Or do I lie?
If I tell the truth, my disability case is lost. The one thing my lawyer stressed to me is to be highly aware of what I say to doctors because my own medical records will provide my testimony. I can’t tell the Social Security Administration I’m too sick to work but also tell my doctors my meds are making me better.
I don’t actually want the “NEET bucks,” as my oldest son refers to them. He doesn’t think it’s a bad thing at all to take money from the government and not work. (Although, it should be noted that he currently makes more money per year than I did until I was 40.)
But I actually really want to work. And I’m doing well enough right now that I really think I could. But the problem is that I don’t trust my body and brain not to betray me because they have before. Since I started the meds, I haven’t been through a Texas summer yet–always the time of my nearly-annual relapses.
What if I blow my disability case by saying how well I’m doing now, but four months from now I have another relapse? My relapses always require a lot of sleep and take months of recovery. It seems reckless to ruin my shot at disability based on the assumption that I’ll always be doing as well as I am now.
But the truth is that if I were to get disability now, I would feel like I was cheating. The fact that I walked six miles on the treadmill yesterday (as I do a few times a week) is a pretty clear indicator that I am not too disabled right now. I do not think I’m too sick to work, especially when there are people who still go to work with MS who are much worse off health-wise than I am.
To be honest, I think it’s an uphill battle for me to get disability in the first place. The neuropsychologist basically said as much in his follow-up call with me. He said the fact that I was one of the highest-scoring people he’d ever tested on verbal skills was probably going to work against me.
At the time he examined me, I had almost no working or short-term memory. Now I’ve gotten them back, thanks to the meds and regularly getting enough sleep. But even now, if I have a night of poor sleep, my working memory goes back to nearly zero again until I can catch up on sleep.
If I could get a second shift job, I would not be working against my body’s natural rhythms and would be less likely to have nights of poor sleep. Plus it would mitigate the heat factor that contributes to my relapses. I could leave for work when my car’s been in the garage, so that wouldn’t cause me to get overheated. By working after dark, my car wouldn’t get as hot while I was at work, so I wouldn’t be getting into a 100+ degree car after a long day at work.
But can I really count on being able to work a night-shift job forever? I already know that it may be required to work days at least for a while after I get my master’s degree.
Can I somehow overcome the poor sleep factor with a normal day job? Adequate sleep is the number one factor in whether I stay well or not. And it’s not as simple as just training my body to go to bed earlier. Even hardcore sleeping pills won’t knock me out by 10 pm.
If I can avoid a relapse this summer and I can get a night shift job, I feel moderately confident that I can stay well. But what if I have another relapse?
That’s why it matters so much what I say to my doctors in the next couple weeks. Should I be honest and say I’m doing much better, knowing that doing so means I’m essentially ending my shot at getting disability? Or should I tell them about how I’m doing on my worst day (which now hasn’t occurred in months?)
I think I have to be honest because my personal ethics tell me to do so. I also have to call the lawyer before it goes to the next stage of appeal.
But that’s placing a whole lot of weight on my ability to stay well, which I’ve never been for that long before. It’s more than a little scary to bet on my health.