Has My Illness Stolen My Future?
Last updated: February 2021
When it comes to my life with multiple sclerosis, one thing has become very clear: In order to thrive in my day to day life, I need to have my time very planned out. Not only is a preplanned schedule important to me when it comes to avoiding the dreaded “MS tax” but it is also vital to my mental health. While I thrive best when my days are planned out, that need for planning disappears when I start thinking about the future. My situation in life and the unpredictability of my illness has made it difficult and terrifying for me to look to the future.
My current reality
As I write this, I’m 43, single, disabled, barely drive, and really rely on a roommate to make my life work. My illness forced me to leave my career a little more than 6 years ago. I rely on disability to survive, and I mean barely survive. It is such a minuscule amount compared to what I once made as an experienced software engineer. To make matters worse, pretty soon, I’ll need to change my insurance situation (that’s a story for another day). I can’t imagine how I will afford that when I feel like I am already treading water, trying to stay afloat.
I'm not just fighting my MS, I'm fighting poverty
Anyone who thinks that people on disability are lazy or scamming the system simply hasn’t experienced it. No one would choose this existence. Not only am I fighting my disease on a daily basis, but I’m also fighting poverty and the ability to simply stay alive. Being on the younger side and not having any significant type of person to help me only makes this struggle even harder. Living like this is such a struggle that there are many days where it seems impossible. It’s no wonder that thoughts of suicide are common for folks like me.
For the past few years, I’ve been pretty stable. I still suffer from a host of symptoms, but at least things haven’t gotten worse. I don’t worry about it often, but sometimes I wonder when that might change. My disease-modifying therapy (Tysabri) has done a great job holding this disease at bay. Realistically though, that dam could break at any time. I could become “JC positive” or the drug could just stop being effective for me (after all, my medications prior to Tysabri suddenly stopped being effective, why wouldn’t I expect the same now?). I don’t think about these potential problems much, but I do when it comes to any kind of long term planning. My very first exacerbation seemed to occur overnight. I went to bed fine and woke up unable to walk. Some 20 years later, that still has an effect on me, making me realize just how quickly my life can change.
So given my situation in life, coupled with never knowing when my health might suddenly get worse, it seems unfathomable to think about the future. Vacations, a new apartment, moving, etc. How can I think about anything past the next few days when I don’t know how my body will be or what kind of financial situation I’ll be in? I try not to let my illness be a deciding factor, even if concerns certainly give me pause at times. The rest of my situation in life certainly makes it hard to be forward-thinking though. As I said, I’m treading water here and I’m not sure how long I can keep it up.
Being disabled is a fight for survival
I simply try to enjoy the little things that come during my day-to-day life. All while I put off any idea of the future. Being disabled is a fight for survival. I’m not complaining, I’m just stating a fact. There is no need to feel sad for me, just take the time to understand that many people on disability are really struggling. If you are in the same situation as me, I don’t have any real tips for you, but I hope when you read this, you felt that you were a little less alone and that someone else understands you. Because I do.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: