As we’ve said many times, it can be hard for MS patients to publicly talk about what their lives are like, especially if they are employed and don’t “look sick.” Some patients we spoke to said they’d love to tell their stories, albeit in an anonymous way. Having to hide a big part of who you are is a foreign concept to many, but it is sadly a big part of living with MS. Interestingly enough, many MS patients have adopted the language of the GLBTQ community in this regard and will often talk about the pluses and minuses of being “out.” Some will deride celebrities who have come out, stating that those are people who are “safe” in some way from the repercussions of their decisions. As everyone with MS experiences different problems on different levels of severity, it can also be hard to form a shorthand to help people who are unaware of the complexities. This patient spoke with us anonymously, so all of our usual promo photos here will be the blank avatars you see around social media outlets.
What are some of the biggest hurdles you’ve run into socially, professionally (and any other public ways) dealing with your MS?
Most of the hurdles I face right now are predominantly in my own head, I think. I am self-conscious around my “limpy” gait and get nervous going to new settings. I’ve had some serious falls and I’m pretty scared about that. I know if I get a serious injury, or even a minor one, it’ll really be a setback. Places out on the world could definitely be more accessible for lots of folks with more severe handicaps than mine, but I think a lot of it is mental, for me anyway.
One of the hardest things about MS is that it’s really an assault on your sense of who you are. I was always a really social person, up for anything and now I have to do a lot of preparing for anywhere I go-thinking about the set-up, my energy level and how comfortable I may or may not be there. It really sucks and is a huge adjustment. I’m trying really hard to not turn down lots of fun things, but it definitely seems easier to just stay home sometimes.
It’s tough at work, because even though my boss knows, a lot of other people don’t. It’s pretty obvious I have something going on, but I basically say it’s just orthopedic problems. I’m not particularly private about it, but the look of terror in people’s eyes when you say you have MS is really tough to handle and I DON’T want to be pitied. Again, that gets to my sense of who I am-I’ve never been great at letting people help me or acknowledging my limitations (to be honest, I never really thought I had any!). There’s a real concern about job security too. Part of me feels like it can protect you a bit if you disclose you have MS, from a legal standpoint, but I’ve also heard stories of the opposite, so I’m cautious.
How does MS affect you (meaning- what are your usual symptoms and what ones are the worst for you)?
My gait and balance issues are the worst. They most greatly affect my life and give me the most difficulty. I actually have dreams of running and walking really smoothly again. I regret every time I took an elevator and didn’t climb stairs, not knowing it would barely be possible for me one day. I get nervous in situations where I may need to move quickly, like in an emergency- my dog gets loose or my son gets hit by a pitch in baseball and I have to get him to the emergency room. I sometimes am astounded that I have such a hard time walking – like, it’s so strange and something you take for granted. When I’m walking well some days, I completely notice it and am really psyched and feel like my old self. I can never predict when those days may be, though, and, unfortunately, they are becoming less frequent. At some point in the not too distant future, I’m sure I’ll need a cane. It’s really a loss and a grieving process.
What makes it hard for you to talk about your diagnosis publicly?
Like I said before, it’s really that look people get when you tell them- they look so sorry and horrified, like you told them you just had leprosy or something. I expected the people that love me to cry when I told them, and they basically did, but it’s other people’s reactions that get to me. I wish I was more public with my MS, because I feel like it would make me less self-conscious and I don’t like being insincere about what’s wrong with me. I just consider that part of my process and if there’s an upside to having an MS diagnosis, is that you really start to make yourself a priority and give yourself carte blanche to say and do whatever you want!
What would you like people who know nothing about MS to know about it?
I would like people to have a greater understanding around how individual the disease process is to each person. You really can’t judge one person’s MS against someone else’s. It’s so unique and really means different things to each person who has it. Like any disability or chronic illness, the important thing to really focus on is helping people cope with the limitations as the disease progresses.