But You Did It Before...
If you live with MS, how many times have you heard something like this: “But you were fine yesterday!” or “You didn’t have any problems doing it in the past!” or “You looked pretty good earlier”? Maybe they don’t say anything, but they give you that look (and the attitude that comes with it). You know that look, the one that says they don’t believe you when you say you can’t do something because of your illness. All because they’ve seen you do it or something similar in the past.
Friends, family, and even doctors have all expressed similar thoughts to me during my life with multiple sclerosis. As many of you likely know, coming across this type of disbelief is incredibly demoralizing.
What you see isn’t what you get
For a lot of folks that suffer from MS, most of their symptoms are not all that noticeable to those around them. Fatigue, cognitive dysfunction, pain, vision problems, and even spasms can be almost impossible for others to notice. If people were to look at me, even if I was feeling at my worst, I’d say that 9 times out of 10, they would be unable to see anything wrong with me.
While I’m happy I don’t look how I feel, it makes people think nothing is wrong with me. That makes their expectations for me unattainable. Along with that, I may have looked great earlier, but they have no idea how I might have been struggling on the inside. When you have MS, you learn to put on a good show (a performance that can be hard to keep up). Social media, where everything looks great, definitely contributes to this issue.
The challenges of unpredictability
Being unable to see what I am struggling with is only part of the problem. I find that another key issue that people have a difficult time understanding is just how unpredictable my illness can be. I might be feeling pretty good one minute and absolutely awful the next. One thing I never expected with this disease was how quickly something could trigger my symptoms, how fast my condition can go downhill. I might confirm plans with someone in the early afternoon and then a couple of hours later I may be stuck on the couch, unable to move. That’s a tough thing for people to understand and it makes us appear a tad “shady” to some folks.
Paying for it
Another factor that confuses others is the good old “MS Tax”, the price we often pay for being active. Maybe you saw me earlier and not only did I look okay, but I might have actually been feeling good (as good as I can feel anyway). That activity may have worn me down though. My body uses a lot more energy than the average person, and I get worn out quickly. I need time to recover and I often can’t predict how much rest I’ll need or when I’ll need it. So maybe I looked good earlier, maybe I’ve done something before, but I might be hurting now and need to rest.
Sorry to disappoint
The difference between how I look and feel, the unpredictability of my illness, and my need for more rest than the average person all lead to me disappointing a lot of people. When these situations arise, I wish they could understand that no one is more disappointed than me. When we have those good moments, it’s easy to forget how it might come crashing down later. When it does, it’s devastating.
So having friends and family fail to believe you is really like rubbing salt in a wound! Not only do we now feel bad because our bodies have failed us, we feel like we’ve disappointed others. Add to that, the feelings that come with no one believing you, and the entire situation is incredibly deflating.
Thanks so much for reading and always feel free to share! As always, would love to hear about your experiences in the comments below!
Have you ever experienced a "weird" symptom and wondered if others with MS have experienced it too?