MS Is Like Having a Winning Ticket to a Club You Never Wanted to Join

Jessie Ace avatar

by Jessie Ace |

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31 Days of MS, MS episode, certainty, gratitude, unique, symptoms, the circle, affirmations, fatigue, depression, progress, presentable, disclose, dog, temperature, end of the year, uncertainty, online community, conflict, bloated, enabled, caffeine

Recently, I was given the exceptional honor of finding stories for MS News Today‘s upcoming 31 days of MS initiative. I loved the challenge, and used it as an opportunity to catch up with friends I’ve met over the years while doing the “DISabled to ENabled” podcast or at various events. Somewhere along the way, I seem to have learned something. 

By reading each story sent to me, I realized how different we all are. MS doesn’t come with a one-size-fits-all approach. Our experiences are different, and our symptoms vary, as do our medications.

Even if one piece of your story is similar to someone else’s, you’ll never find someone who is a direct copy of you. We are what is known as “snowflakes,” an exceptional thing. MS makes us all truly unique. It is the basic thing that unites us as a community. 

I love meeting other people with MS. It’s so interesting to hear how different each experience is, such as the reactions from a person’s friends or family members, how someone copes, or how they thrive. I enjoy hearing about how people fight back against their disease, or when they do something extraordinary like setting up a charity or running a marathon. 

Weirdly, MS is like having the winning golden ticket to an exclusive club you never wanted to join, but where you are happy to hang out because the people are friendly. 

Hearing stories about the strange symptoms people have makes me feel “normal,” because it allows me to feel like I’m not alone. This is especially true when family members and friends who don’t have an illness look at us like we have six eyes and a tentacle when we tell them that nonexistent ants are crawling all over our skin. 

When people around you understand, it feels so much easier. 

It’s a strange connector. I have met so many celebrities through various MS events, and talking to them about their experiences is extraordinary. They often have similar fears and concerns as we “normal” people do. Imagine having those fears amplified until the entire world knew your every move. I can’t say I envy them!

As I look around during those events, I’ll see people tripping over air, messing up their words, using walking aids, and repeatedly going to the bathroom. I suddenly feel super normal. I feel at home. These people are my family. 

They possess unique qualities like patience, calmness, and acceptance, which many others seem not to have. 

Yes, having chronic illness totally sucks. But together, we are impressive and can get through anything.

***

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.

Comments

John Stillitz avatar

John Stillitz

Thank you Jessie, I love the positivity of this article.
I often refer to our discussion group as our "exclusive Club".
Of course it's a Club that we would all rather not belong to. Within our circle you are so right, we all feel a great deal stronger as we listen to our guest speaker's presentation.
Suddenly we realise that instead of having some weird and alien experience, we may be perfectly normal. By chance one of us will discover that they may also have that same symptom.

Reply
Jessie Ace avatar

Jessie Ace

True story John, thank you. We often find small similarities between us, even so, each of our experiences is very different. For us, these weird symptoms are just normal :)

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Phil avatar

Phil

They'll never understand until they experience it.

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Jessie Ace avatar

Jessie Ace

True story! :)

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Arloa Raffler avatar

Arloa Raffler

Very well done. I applause your words and you sense of bringing us together. Truly "normal" people do not see what we feel. Thank you for your words.

Reply
Jessie Ace avatar

Jessie Ace

Thanks so much, glad you agree :)

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