Although I don’t ordinarily talk about the details of my disability, I feel the need to now because I feel apprehensive about the possibility of having to go through a medical review with the Social Security Administration. You see, I have been on disability since 2001, and they periodically send out these questionnaires every 3 to 4 years to determine if a review is necessary. They do this to determine if the person is still disabled according to their rules (a big mystery). So far I haven’t needed one since 2002.
But when I get these questionnaires it makes me really nervous. What if I lose my benefits? What would I do? I have no options! I’ve tried volunteer work on a number of occasions and I failed miserably. My mental health treatment team assures me I have nothing to worry about. I’m like two different people though. Mental illness is often an invisible illness. People just don’t see it. People tell me my blog doesn’t sound like someone with a disability. And in real life, I can be very engaging. People are surprised to hear when I tell them I have a disability. I don’t mind telling people that, I just don’t talk about the details.
There is the me that people see, and then there is the me who expresses herself in her journal and to her treatment team, the same person who remains behind the closed doors of my apartment alone and isolated. But like I said, I don’t usually talk about the details. It’s not something I focus on. No illness defines me. I am my personality, my character, my interests, and my ability to be real with myself and others. My name is Mindy, and I like myself exactly the way I am.
So what’s it like for me, having a disability?
- My ability to function is inconsistent, my schedules are rarely consistent (sleep, meds, meals, personal care, etc.), and then there’s my moods… Sometimes I lose my sense of self. I’m also a little agoraphobic. I hardly get out of my apartment anymore. So if I ever need to buy anything, I buy it online. Often I will stay in for days and just order food from the dining room to be delivered. I go through extended lengths of time on the computer. I can write pages and pages in my journal, or I can’t write anything at all. I can go days where I don’t get out of bed.
- I’m often in a hypomanic phase. For example, this past weekend from Saturday at 2:30 PM until Sunday morning at 6 AM, I was on my computer the whole time. The stimulation was, and still is as of this writing, shooting through the roof. I didn’t go to bed until Sunday afternoon at 1:30 PM. So I was awake for 23 hours. I was functioning very well, feeling energetic, motivated, and productive. The longest I’ve stayed awake in recent years is approximately 40 hours.
- When I am manic, I can either be extremely creative and productive or I can’t concentrate at all. Sometimes I can’t focus well enough to read or write. Like if I’m writing in my journal, I might sit there for 2 hours and only write a couple pages. I would have racing thoughts and can’t stick to any one subject for very long. I might get up to go google something on the computer. Then I start doing something else and forget that I am writing. I can go from task to task and not complete anything. Then I can just sit there, thinking. I get so curious, and it overstimulates me. Then there are times where I write 14+ pages in my journal. I love writing in my my journal!
After a while I come down out of the mania and enter into a melancholy mood, which can last anywhere from a few hours to a few days to weeks. I don’t like to be around people or get online for fear I might say something the wrong way. I get afraid that I might create a conflict and humiliate myself. I hate conflict. The environment I was raised in was highly charged with all kinds of conflict and anger.
That’s it! I’m done. You probably won’t hear me talk about my my own disability again, or at least for a long while. I know other bloggers who are mental health advocates like myself, who do openly talk about their illnesses. I’m just not as courageous as they are. But for now, I’m just so very worried about losing my benefits. I hate that I need to depend on disability. It was only supposed to be temporary. One of these days I hope to be a published author and won’t need it anymore. Wouldn’t that be nice?
Thanks for listening. Have a fabulous day!