The Prison of Chronic Illness
Attempting to explain what it’s like to live with a disease like Multiple Sclerosis is not always an easy challenge. Finding the right descriptors for an experience that few others will ever have to endure can be tough. I recently wrote about how living with MS is a lot like living with mud everywhere. Today, I want to use another descriptor, one that I’ve heard many others use when describing their life with MS: being in prison.
Now, first of all, I haven’t been in prison (at least not yet anyway) so what I know is really based on what I see on TV and in various documentaries and items I’ve read. The similarities really struck me the other day, because I had decided to write a few people in prison through a prisoner pen pal program. I did this because I felt we had a few things in common, some parts of our daily life that are similar. Before I continue, I do want to mention that I don’t always feel this way and I know I have it much better than if I were in prison. Still, there are some things, that at times, feel similar.
Obviously, the biggest reason for this prison analogy is because I spend a lot of time stuck in one place. If I’m having a bad day and my legs don’t want to work, I’m pretty much stuck at home. I’m not really supposed to drive, so that further limits my options, even on days that I’m feeling decent. On the bad days, I’m not only trapped and imprisoned in my house, I’m imprisoned in my own body. There are days when the fatigue, numbness, and weakness are so bad, that even moving around my own house seems next to impossible. When even trying to get to the bathroom becomes a difficult task, feeling like I’m imprisoned very much pops into my mind. A lot of people out there think that being on disability is like a vacation, when in reality, it’s more like being in prison.
In prison, people are often subjected to an ironclad routine that they have no choice but to follow. They have to wake when they are told, eat when they are told, get ready for bed when they are told. While not for the same reasons, I’ve become reliant on my routine. Taking my medication at the same time everyday, having to get rest at the right times, having things set up in a specific way in my house. Not sticking to my routine usually means my body will punish me with an increase in my symptoms.
As I glanced at some of the ads for the prison pen pal program that I mentioned earlier, one of the common reasons people were seeking pen pals was due to loneliness. If you’ve read some of my previous work, you know that loneliness is something I battle often. Being trapped and not getting out much is certainly part of that, as is spending a lot of time actually alone, but for me, also having a disease that is seldom understood by others, also plays a very big part. MS, like being in prison, can be extremely lonely.
I feel like there are probably other ways living with a chronic illness, particularly if you are on disability, is a lot like being in prison; I don’t want to go on too long though! I again want to reiterate that I know being in prison is likely way worse, but it’s an analogy that pops in my head so often, I felt I needed to write about it. Does life with MS ever feel like life in prison to you? I would love for you all to continue the discussion in the comments.
Does your employer provide workplace accommodations due to your MS?