Many of the questions left me thinking hard about my place — our MS community’s place — in the great world around us: How we see the world, and how they see us. How we interact with people in our daily lives, and how they treat us. It can be most difficult when the world sees your place in it differently from how you see yourself fitting in with society.
When Others Would Have Us Feel Guilty for Having MS
One question, along with its commiserating replies, that struck me had to do with other people making us feel “guilty” about aspects of having multiple sclerosis (MS). I hadn’t thought much about being to blame for my disease or its symptoms, but when I did, well … it got me thinking. I have, in the past, referred to the journey of a life with MS as carrying a weighted sack. The disease has a certain heft to it. Its symptoms can add avoirdupois in grains or tons. We get that. We live with it and, to some extent or another, have become accustomed to the shifting burden of our load. What seems unacceptable to me (and many readers) is when others feel it acceptable to add extra weight to our oft-overfilled sack in the form of guilt and fault.
I Refuse to Be Blamed for My Disease
I have learned (most of the time) to tie up the opening to my sack of MS, so as to keep out such additions. I had no hand in the fates attaching this disease to my life. I’ll not allow others to tack on any responsibility, when even science says that it is through no flaw or malfunction that we developed the MS. The way we carry our load is a personal choice. Some try to hide it behind our backs as we walk through our days, even if that walk itself is hindered by its heaviness. Some (or many of us, at least sometimes) might hide behind it, using it as justification or excuse for something others believe we should still be able to accomplish.
Uncomfortable Conversations Are Sometimes Required
If friends or family try to heap on spadefuls of accountability from time to time, I try to understand their frustrations. God knows I’ve had my own bouts of frustration, angst, and anxiety caused by and in relation to MS. We usually have a chat about the inappropriateness of such transferences, and everyone moves on from the incident. I just move on at a slower pace for having to spend valuable energy on the encounter at all. For those who are two or three circles removed from the center of my life with MS, the interaction is far less convivial. If a coworker or mere acquaintance is making me feel less-than due to the way I am carrying my lot, beware the wrath!
We’re the Experts on Our Lives and Our MS
Just as no mother of six would stand for parenting advice from someone who knows someone who once had a child, we’ll suffer no barbed comments from the nephew of a guy they used to work with whose mother with MS could do what we are saying we cannot do. I have no time for anyone (anyone) who feels it their place to judge how I do (or don’t) get on with my life with multiple sclerosis. Their assessment of my attempt at life is not mine to carry. I don’t hide my contempt. I might even snarl when I respond to their quip. I have no time for backhanded compliments, “well-intentioned” advice, or flower-colored judgments. They all weigh me down, and they almost always come from someone I’d never invited into my life in the first place.
I No Longer Engage With Those Who Would Judge Me
I say that I do those things, but the more appropriate thing to say is that I did them. Because I don’t anymore. I don’t take the time or energy to engage with those who seek only to make our slog cloggier. We can’t risk a misstep, as we know too well how long it takes to get back up and on the road again. I simply laugh at the very thought that they have a right to an opinion on how I get on with my getting on. Particularly if they are only acquaintances, I laugh. I laugh at them. I laugh, uncontrollably, like a crazed hyena — and I walk away. You see, I have places to go and good people to meet. Some people just aren’t worth our time. It might seem harsh, my maniacal laughing at the offenders, but it is far less hurtful than the responses that it masks. Wishing you and your family the best of health. Cheers, Trevis
