Declaration of Dependence
Last updated: October 2019
As the sands of time trickle down the hourglass of my life with MS, I find myself in an extremely unpalatable situation. Now close to twenty years diagnosed (but likely having the disease much longer than that), my greatest difficulty is not the individual symptoms that I deal with on a daily basis, but rather, the net effect they conspire to create: an ever-increasing lack of independence. As of writing this, I’m approaching my 42nd birthday, and I’m left with the realization that, more and more, I have to rely on others so that I can exist.
This isn't true for all of us
Multiple sclerosis is a disease that affects everyone differently. You’ve no doubt heard that before, but it bears repeating again. I am the product of many years fighting the disease, much of it with inadequate medication. With the scientific advances of recent years, those newly diagnosed will likely not be in my position. Still, there are many like me, whose bodies have been worn down by this illness. With that, we’ve had abilities stripped from us slowly over time.
What you don't see
If you saw me out and about, you might think that there is nothing wrong with me. However, what you don’t see is that I didn’t get there on my own. I relied on someone else to transport me, as I’ve long since given up driving because of my illness. You probably don’t notice that I’m sitting or leaning against something because standing on my own can be difficult. I’m well-nourished, but you can’t tell that I needed someone else to buy groceries for me because not only is that process difficult due to my inability to drive, but because it’s also extremely fatiguing and cognitively difficult.
Ensuring that I have the help I need
Yep, I may look perfectly fine on the outside, but I am forced to live with a roommate, not only because disability doesn’t pay enough for me to have a place of my own place, but because I simply can’t handle the upkeep. I can’t mow the lawn, cleaning up around the house is difficult, making my own meals can be challenging as well. I might be able to do any of the common household tasks once, but it would be enough to exhaust my body for days (everything is SO exhausting). Everything I do needs to be planned out, not only to maximize my abilities and minimize my downtime, but to ensure that I have the help I need to get through life.
Life is good*
For the most part, my life is pretty good. I put an asterisk on that though, because I eventually begin to consider how dependent I am on others. When I start thinking about my situation, it can be extremely depressing. I lived alone for much of my adult life, and I enjoyed it. I was extremely independent for such a long time, and when I look at my life now, it feels downright depressing. While my life is good, I know that it wouldn’t be if I didn’t have help. I either have to rely on friends or pay for the help I need (again, not easy when you are on disability). Relying on friends takes a toll; it leaves me feeling like a burden and unable to repay the favors. It doesn’t matter how happy they are to help, I still can’t escape how bad it makes me feel.
Living your best life
Despite some of the logistical and mental nightmares I have with this dependent life, I’m doing the best I can. While I feel like I am a burden and an inconvenience at times, I’m doing what I need to live. I know I can’t exactly repay everyone who helps me, but I try to earn it by being the best I can be: by being a good friend, being someone they can count on (even if it’s not physically), and by being a decent human being. It’s very hard for me to admit how dependent I am on others, particularly to myself.
I'm doing the best I can
I get by remembering that life doesn’t go according to plan, and when that plan gets thrown away, you have to either adapt or give up. I choose to adapt and do the best I can. Yes, I get frustrated at times - anyone in my situation would - but that’s OK, as long as I get back up and do the best I can. So yes, I’ve become extremely dependent on others. While that can get me down at times, it hasn’t stopped me from living and it shouldn’t stop you either.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: