Welcome to Our World
Last updated: August 2021
At the outset of this current pandemic we are now in because of the coronavirus, I was loath to write anything that might involve mentioning it. After all, there is SO much out there about the illness, the precautions you need to take, and so on. However, as more and more people are forced to hunker down at home and not leave their house, I can’t help but want to say to them “welcome to my world”. As someone who is both disabled because of multiple sclerosis and immunocompromised because of my treatment, isolation and fear of germs are something I live with every day. This is really something meant for friends and family to read more than those who have MS.
An isolated life
While it’s not the same for everyone who has MS, my particular situation leaves me stuck at home for long periods of time. If I’m lucky, I’ll get out of my house for a few hours once a week. I’m a 42-year-old single man and this is what my life has become because of this disease. Forced from my career, I now sit at home with little to do. Granted, I’m not just casually sitting all of the time: for a big chunk of it, I’m laying down and not feeling well. Sometimes, I’m not even really sure where the time goes because of this.
Getting out of the house comes at a cost
Point is, it’s not that I’m simply sitting home and bored out of my mind. Nope, I’m sitting home, bored out of mind, and feeling physically awful. Some weeks are better than others, where I’ll maybe make it out of the house twice, which is great, but it comes at a price. Getting out and being active always comes with a cost, that of the dreaded “MS Tax”. I’ve now spent years like this, rarely getting out of the house because of my illness and the abilities that it has taken from me.
Those moments that I do get out and am among people, I need to always be cautious of my surroundings. My medication has a dramatic effect on my immune system. Many MS medications work by trying to suppress or alter our immune system. Our immune system, that part of our body that is supposed to protect us from illness, is actually what is trying to kill us. Because of MS, it’s confused and thinks parts of our nervous system are foreign invaders that must be destroyed.
Simple illnesses are huge issues for me
What all that means is that the simplest of illnesses become massive issues that our body can’t fight off. I spent all of January in bed because of this; I had been around someone and caught a bug that they likely never even noticed because their immune system was swift to rid them of it. It left me in bed with a fever way over 100 for three and a half weeks; it is not a stretch to say that it nearly killed me. The current pandemic has caused folks to really notice if someone near them coughs or sneezes, that’s a way of life for people like me.
It’s pretty interesting to me to see so many people that can suddenly no longer work now becoming concerned with the system and getting help for their financial woes. After all, this is exactly what the disabled have to deal with every day. Social Security Disability isn’t really enough to live on - it’s just not. My own current situation is extremely precarious and I feel like every month could be my last, not even because of my physical ailments, but because of my inability to survive in this world on such a very low income. If my current housing situation changes, if my roommate gets married, that’s pretty much the end of me. I didn’t ask to be in this situation, I worked hard all of my life, paid taxes all of my life, but this is where I’m at and have been for a while.
Keep in mind
So, when I see people suddenly worried about money, or complaining that they are stuck inside, or panic buying hand sanitizer because they are afraid of germs, well, I can’t help but think: welcome to my world. There is a big difference between my situation and theirs, though. Eventually, most people will be able to leave their houses whenever they want. They won’t need to fear catching something that could kill them, and they'll be able to earn money again. When they reenter society and get all those things back, people like me will still be home, still struggling just to exist.
Thanks so much for reading and as always, feel free to share!
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: