When MS Makes a Liar Out of Me
Throughout my life, I have always strived to be a very honest person (if you’ve read much of my writing, you might even say I’m a bit too honest). However, no matter how honest I try to be, I can’t help but think of all the ways multiple sclerosis makes me feel like a liar. The unpredictable nature of MS is usually the biggest culprit, but expecting others to not understand our illness also plays a part.
Unpredictable MS: The real cancel culture
Let’s face it, if you have MS, you’ve probably canceled some plans since being diagnosed. Our disease is incredibly unpredictable. We can feel perfectly fine one minute but absolutely awful the very next. This means we cancel a lot of plans. It’s not really lying when I suddenly have to cancel my plans, I mean I did expect to go through with them when I made them, but it sure does begin to feel like a lie after a while. Especially to our friends and family who may not really understand why we cancel so much.
Suddenly not showing up gets very old very fast to most people and I’m sure can make us seem a little disingenuous. I know from experience that some folks have thought me a little dishonest from the way I constantly and abruptly cancel on them. Even with good reasons, it’s hard for people to take you at your word when you keep breaking it.
There is a lot behind my smile
I can’t discuss how MS makes a liar out of me without talking about how much I fake being well. Even when I am feeling my best, I’m usually still not feeling all that great. I typically have some sort of nerve pain, numbness, or fatigue. That doesn’t stop me from putting on that big old smile and pretending that everything is great though. So many of us simply want to look like everyone else and so we put on a good show to prove to others that nothing is wrong.
We want to be known for more than having an illness. Most of us also don’t want sympathy from others. I’ll take empathy, but not sympathy, and since I also realize most people are incapable of truly understanding what I am going through, I do my best to hide it. Over time, people with MS become exceptional actors in the way we hide our illness.
Lies aren’t always for other people
Probably the biggest way my MS makes me dishonest is with myself. I suppose you could call it denial, but I am constantly telling myself that my disease isn’t that big a deal. I think a lot of us do this because it’s one hell of a coping mechanism. I try to reassure myself all the time that my life is great despite my illness, that my pain isn’t too bad, and that maybe things wouldn’t have been better without MS. Sometimes the biggest lies are the ones you tell yourself.
I need those lies though, I need them to keep going on, I need them to feel better about myself. I think denial is so often seen as a bad thing. While I think that can be true, I also think a certain amount of denial is absolutely necessary when you live with a disease like MS. For me, living with an incurable illness means straddling a fine line of denial. On one side, I am still realistic enough about my situation that I do what’s necessary to keep living as best as I can physically, and on the other side, I’m lying to myself enough to make sure I don’t mentally check out of this fight.
How often do you experience public restrooms not being ADA compliant?