MS & Relationships

I am very lucky to have the family and friends I have in my life. They are understanding and loving. But sometimes interacting with friends and family can be more challenging when you have multiple sclerosis. Important relationships take effort and energy.

Fear of worrying my friends and family has taught me to sound positive when answering the "how are you?" question – “Fine.” “Good. You sound good.” And, being a people pleaser, I sometimes feel I have to comfort the people who get upset when I am feeling bad. So I filter my responses, I am cautious with my words. 

I am no longer able to be the same Rachel I was before MS hit me, though I try. It’s harder for me to interact in groups. My wheelchair isolates where I can go and where I can be in the room. If there is a lot going on, I can get disoriented, wondering where I should focus my attention. I often wonder if the pain I am feeling on the inside shows on the outside. I know my energy level often shows on my face or in my body language. So things are cut out or cut short. I often wonder the title of Mindy Kaling’s book, “Is everyone hanging out without me?” 

The disease not only wreaks havoc on us internally, physically, and emotionally, but externally as well, as it changes our relationship with the world and the people in it.

Suddenly, I am Rachel with MS, Rachel in the wheelchair, or even just the girl in the wheelchair. This especially goes for people I interact with infrequently. I am easily recognizable now, the redheaded girl in the wheelchair. I try and remind people that there is a human being in this mechanical contraption by being upbeat and friendly. But I know people see the wheelchair first.

So when you see a wheelchair just remember there is a person there too.

I'm Sorry

“Am I in your way? I’m sorry.” “Could you move so I can get through? Sorry.” “I’m sorry.” “I’m sorry.” “I’m sorry.”

I say “I’m sorry” a lot. I’ve said, “I’m sorry” so many times in the past weeks because I’m progressing and things are getting harder. Adam always tells me to “stuff your sorries in a sack.” Meaning, not that he doesn’t accept my apologies, but to shut up about it. I don’t need to be sorry.

By saying, “I’m sorry” to everyone over every little thing, I think I’m really saying, “I’m sorry I have MS.” I’m saying I’m sorry because I am. I am sorry that I’m not able to do the things I used to do, want to do, and can no longer do. Maybe the “I’m sorry” I keep repeating is less an apology than it is me saying, “I’m sad that I have MS.” I know it’s not my fault and I’m doing the best I can. But is it? And am I? The fact that MS doesn’t follow a structured path makes it all the more infuriating. “I’m sorry I don’t know what next year will bring, or even next week, or even tomorrow."

How do you live with this thief of a disease? It won’t let me stop from feeling sorry.  But the trick is to allow ourselves to feel sorry without feeling sorry for ourselves.