The responsibility for raising MS awareness goes both ways

Every once in a while, I wake up prepared to swing my legs over the side of the bed and get moving. That sleep-induced forgetfulness evaporates as soon as the reality of multiple sclerosis (MS) reminds me that I can’t swing anything.

I suppose I should be grateful that uncooperative limbs keep me from throwing myself into a surprised heap beside the bed, but I’m not. Aside from that occasional waking one, there isn’t a moment when I’m not aware that I have MS — and it’s hard to be grateful for that.

What does “being aware” mean anyway? Even before I was diagnosed with MS, I was aware that it existed, as is anyone with the capability of seeing pharmaceutical advertisements on television. However, I’m coming to realize that being aware, or raising awareness of multiple sclerosis, means more than just that. Sure, it’s about letting people know it exists, but I like the idea that it also means drawing attention to life with the disease. With that in mind, and since March is Multiple Sclerosis Awareness Month, I’d like to share a few things I’d like people to be aware of.

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We’re all unique

Be aware that multiple sclerosis isn’t a one-size-fits-all disease. Besides the different types of MS, each person with the disease has their own unique course and experience. You might know someone with it who is out rock climbing every weekend. I say do what you can while you can, so I’m genuinely happy for them, but I can’t do it. That doesn’t mean I’m not trying hard enough. It’s just that my MS isn’t their MS or anyone else’s. Our symptoms, level of disability, workarounds, and treatments are as varied as our disease courses.

From one day to the next

Be aware that MS is predictably unpredictable. I have good days (mere hours sometimes) and bad ones. I don’t know how I’ll feel tomorrow, much less next month when we’re scheduled to meet up. Please understand that I’ll do my best to be there, but my abilities most likely won’t be exactly the same as they were the last time we met. They might be better — but probably not. MS isn’t usually that considerate, although it does allow me to be completely honest for once when I say, “It’s not you, it’s me.”

Be aware that even if it’s a good day, people with MS have only so much energy, and it never seems to be the same amount from one day to the next. Yes, I know that I was able to do “that” yesterday and therefore I should logically be able to do it today, too, but logic and MS do not always go hand in hand. Be aware that some of that energy is spent on emotional resilience, too. I really am content, but I can’t smile every day.

It’s not my intention to make being aware of my MS read like the equivalent of a “Handle With Care” sign. I want to draw attention to my reality, not make a list of variable cautions. Maybe this (and every) month, I’m the one who needs to be aware that much of that responsibility lies with me.

I’ll do my best, but in the meantime, could someone invent a sort of multiple sclerosis mood ring?

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.