I’m doing it again.
I’m limping from my car to the entrance of a grocery store. I’m tired after being on my feet all day, so I opted to use my accessible parking placard after circling a full parking lot three times, to no avail.
But the limping is fake.
Why do I feel this is dramatic display is necessary? I’m never going to see these people again. What am I trying to prove?
I shake my head, disgusted at how ridiculous I am.
There are a few phrases I sometimes hear being circulated in our community that never fail to make me cringe, but in my opinion, none of them are as detrimental as “Fake it until you make it.”
Many MSers do our best to fit in, some keeping the disease a secret, not wanting to stand out or seem needy or burdensome, and some not wanting to be subject to interrogation. It’s not easy living, working, and socializing with a generally invisible illness. It can be lonely and alienating. So while I can appreciate the sentiment behind “Fake it until you make it,” I find it to be a problematic mantra to live by.
And here I am, faux-limping through a crowded parking lot to avoid accusations and “but you don’t look sick.”
Invisible illness, right? That means no one can see it. And as far as the general public is concerned, if it can’t be seen, it doesn’t exist until proven otherwise. So why would we want to fake it? Persevere and do the best we can without burning out? Sure. But fake it? No way!
One of the hardest things for me to cope with is people not being able to understand or relate to what I’m experiencing. So if I’m having a bad MS day, why would I want to pretend that nothing is wrong? Or why would I choose to express the degree of an unseen symptom by exaggerating something else outwardly? Isn’t that enabling the precise opposite result of what I want and what I need from others?
I’ve lost a job over my having MS. I’ve had friends drift away after my diagnosis. That stuff hurts. Bad. And I’ll bet many readers here have experienced feelings of rejection and isolation as well. Tack on feelings of depression and resentment that one may experience after being diagnosed with a chronic, debilitating disease, and it can be easy to become bitter and jaded.
It’s been crucial for me to have conversations and to set boundaries and expectations surrounding my symptoms, particularly the invisible ones–fatigue and cog fog. It has allowed me the opportunity to feel heard, and it has given others an opportunity to better understand my needs.
Use discretion when discretion is due, but when you can, talk to people—friends, family, strangers—about your MS, and leave no stone unturned. Tell them about your symptoms, your diagnosis, what you experience day-to-day, how MS has impacted all facets of your life. Tell them. When someone asks, “How are you?”, tell them. Don’t fake it. That adds to the problem by sweeping a teachable moment under the rug.
And I think that’s where we can fail our family and friends, as well as each other in our community. I don’t know that we always give the people around us much credit, automatically assuming no one can (or will try to) understand. And while that may be the case for some people, it won’t be for most.
And despite knowing that to be true, I still find myself not always being able to be as vocal about how I feel, sometimes to even those I trust the most. It’s a tough habit to break, and one that is rooted so deeply in societal norms and expectations. I need to work on this, on making my needs heard, rather than staying silent in order to keep the rest of the world comfortable.
So for now, I vow to unabashedly use my parking placard when I feel I need it, and I vow to walk to my destination with my head held high…
…and without faking a limp.
Playing the drums, which had been effortless and fluid, has become decidedly effortful and deliberate.