Multiple sclerosis awareness is for people with MS, too

The Cambridge Dictionary defines awareness as “knowledge that something exists, or understanding of a situation or subject at the present time based on information or experience.”

That definition perfectly matches the stages of my personal awareness of multiple sclerosis (MS). I don’t recall hearing much, if anything, about MS prior to the age of 16, when one of my teachers was diagnosed with it. From that point until my late 20s, you could say I knew only that it existed.

I learned more through information presented in college and military classes before my own diagnosis, and through printed and online resources afterward. Now, although I still rely heavily on information, my awareness is rounded out by 10 years of actual experience — both mine and that of others.

This month has been focused on raising awareness of multiple sclerosis, mainly by enlightening people without MS about the disease, its symptoms, and our lives with them. I wouldn’t ever change that because it’s exactly where the focus should be. However, as Multiple Sclerosis Awareness Month draws to a close, I want to bring up a few things that those of us with MS should be aware of.

Recommended Reading

February 28, 2024 Columns by Mike Parker

MS awareness events are an opportunity to build understanding

What we should keep in mind

First, realize that you may be the first or only person with MS that somebody ever meets. The adage “you never get a second chance to make a first impression” has never been more true. When talking with a person without MS, consider what you’d have wanted someone to tell you during your first encounter. I think the above definition of awareness provides a near-perfect template. You can simply let someone know that multiple sclerosis exists, give some brief information about it, and wrap up with your personal experience.

Those last three words are so important. I frequently harp on this, but know that your personal experience is different from that of any other person with MS. I think that’s always important to point out because the average person tends to think that everyone with MS experiences the same symptoms and disease progression. Everyone should be aware of how unique we each are, but it’s doubly important for someone newly diagnosed.

Be aware of your abilities. Be honest about them, both with yourself and when letting others know about your limits. This includes realizing that yesterday was yesterday, today is today, and your stamina and tolerance have changed in that time. It’s OK (though not always easy) to say no and prioritize yourself. It might feel selfish sometimes, but it’s not. It’s just giving yourself grace.

Understand that as a person with an all-too-often-invisible disease, there will be comments that grate on your nerves and are full of toxic positivity. I really wish that was something we didn’t have to be aware of, but unfortunately, it is. Part of spreading MS awareness is helping to minimize those unhelpful comments, and that means being aware of our responsibility to do so. It bothers me when I bite off my frustration with a forced smile and a muttered “thanks,” instead of saying how I really feel. That’s polite, I guess, but it doesn’t make anyone aware that there’s a problem.

Bottling up frustrations only to take them out on those closest to you is not the answer. Being honest with yourself about your feelings is at least as important as being honest with others. Self-honesty and self-awareness are self-care.

Finally, recognize that it’s OK, maybe even vital, to laugh. For me, that means that it’s OK to be laughed at sometimes, too. If my friends or family treated me any differently than they did before multiple sclerosis entered my life, that would be the worst kind of toxic positivity.

This wasn’t meant to be an advice column. The only reason I was able to list even a few things I think people with MS should be aware of is because they’re things I should be aware of, too. Leave a comment with what you think those of us with multiple sclerosis should understand.

I also plan on making this a thread in the MS News Today Forums. Join me there to continue the discussion, or feel free to start one of your own.

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.