Ugh.
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.
This article was authored by Cat Stappas and originally published on the National Multiple Sclerosis Society’s blog, MSConnection.org, on February 2, 2020.
it's only a bruise. 
This resonated with me. I struggle with telling the ones I love, how I really feel and what is going on in my body. I don’t mention the times I feel the tingles like a limb has fallen asleep, I don’t mention the times I have pain in my legs, just from a simple touch, I don’t mention the times I feel like my bowels aren’t working how they used to. The hardest one for me though is the cog fog. How do you explain to your coworkers that you made a mistake, one that you would have never made had you not had this disease, but one that you know was caused by cog fog. It’s the most difficult symptom to explain. If I mention it to a loved one, they say, “oh, i’ve had days like that.” or “it’s okay, everyone makes mistakes.” They don’t understand how we know that this isn’t just a “mistake”, this isn’t just me “having a day”. This is me struggling with my illness. I find myself protecting my loved ones by not telling them the way I am feeling. I figure the emotional toll they have already had to experience with my diagnosis, is enough for them to bare. Hearing about my detiororation does nothing to help them, just causes them more worry, and a feeling of helplessness. This is why many times, I choose to keep it in. Let them see me as fine, let them see me as thriving. I will deal with the hard parts of this disease somehow myself and with the help from posts like this, and those of us who struggle within the MS community. I agree with you though, it’s not healthy for us either.
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I can relate.
Unfortunately, now, my PPMS symptoms have progressed to the point where no longer have to fake it and must use one or two Trek poles constantly for stability. This is an excellent post.
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I tell everyone and anyone that I have MS if the course of the conversation makes it possible. People need to know that we are all over the place, have good times and bad times, but mostly do pretty well most of the time given our specific accommodations. I keep it light. If I stumble or fall, I get up and say “I have MS. We fall down a lot.” If I lose my words, I say “I have MS. We sometimes lose our words. For me it always seems to be nouns — names of people, names of things, even names for ideas.” If I’m too tired, I say “I have MS. Of all the weird symptoms, deep fatigue is the most common. For me it feels like each arm and each leg weighs 300 pounds. They’re hard to drag around.”
As you have no doubt experienced, most people will say they too have those issues. It used to irk me. But I have come to think it’s their way of empathizing. Of saying that it’s ok with me if you have those issues. I am not reducing you to your disease.
Sure, I have had uncaring responses, whether verbal or nonverbal. Mostly not though. Besides, sometimes people don’t want to like me and are happy to have an excuse to dismiss me. I can live with that. I don’t expect to click with everyone, MS or no MS.
BUT: I sometimes DO limp a little, of be showy about using a shopping cart for support! What’s up with that? I park in the handicapped spot to preserve energy and avoid getting heat sick walking across a large parking lot! Who wants to spend a whole day worth of energy/ability on a lousy 20 minute errand? Why do I assume judgement when no one has expressed judgement? I’m going to stop it. Put the pressure on the watchers. If they feel I’m in the wrong, it’s up to them to let me know. Then we can talk. And connect.
Wish me luck.
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Get it, girl!
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Very heartfelt as always
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A very honest post; well done
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I never fake it. I don’t tell anybody anything. When I told my friends that I had MS, they they dropped me. I wasn’t any fun anymore. I’m lonely and depressed,
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Love your posts. When I first got my placard I wasn’t so sure about using it. Only used it when I had to. Then when the temporary one was running out I asked for another. The Dr said sure you have a permanent disability.. That was a moment that struck a cord. It was nice to get another, for when I need it, but to hear this is permanent really hurt inside. Here it is 5 years(ish) later and when I have to use it, im usually so stiff that it takes 5-10 minutes to get out of the car.
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