Your MS Isn’t My MS

Your MS Isn’t My MS

It sounds like a variation of a school yard taunt or bragging – but my MS isn’t your MS.  So often when we are in conversation on line with others and talking about our particular course of multiple sclerosis, it is only natural to compare where we are with this disease to how others are doing with their own MS.

And that is where we have to put the brakes on and bring  the conversation train to a screeching halt. Your MS is never going to be like my MS, and that is part of what is so confounding and confusing about this disease for us, our family and friends, and even the doctors and researchers.

We hear over and over about the snowflakes – no two are ever alike and how MS is like those snowflakes and never the same way from person to person.  As trite as it might sound, that is the absolute truth. Put 1,000 people with MS in the room together and the stories and symptoms from each person will be different as to how their MS acts out.

It’s no wonder our well-meaning friends who come to us with stories about other people they know who have multiple sclerosis, get that stare from us and the reply that our MS is nothing like that, whatever ‘that’ might be.  We are all unique in our disease and it is what is so frustrating to us and to the researchers and doctors.

I started thinking about this again the other day when I read Stephanie Butler’s 50 Shades of MS Pain. I understand what she is talking about with the pain she experiences, but that’s not my MS.  So far, knock on wood, I’ve not had significant MS pain, but I do know it is real because of the stories from people like Stephanie who are willing to talk about their particular case of MS. Or from seeing first-hand my aunt or my good friend experience excruciating pain from their MS.

Why do you think we have 12 disease modifying therapies available and many more in the labs just waiting for their turn through the clinical trials and approvals?  Because those darn snowflakes, oops!!  I mean the people with MS all are different and respond to different treatments in different ways.

So what do we do about this unique disease?  We listen to each other.  We empathize with what the other person is going through with their MS and hope they do the same with us.  We take notes, just in case sometime in the future we experience something similar and can apply what we have learned from them to our own MS.  But we also need to continue to struggle against the instinct to compare ourselves against others, and accept that we are different from the next person with multiple sclerosis.

Some people have the misfortune of having doctors who insist that MS comes in one size, one flavor, and anything that doesn’t fit into their preconceived ideas of multiple sclerosis can be dismissed.  They must have skipped school the day they were teaching about the MS snowflakes and didn’t hear the lesson that no two are alike.

Those of us who have MS often try to find commonalities that unite us with each other.  It’s a coping mechanism that gets us through, yet we need to remember that we should never compare symptoms and situations, as if we were on the schoolyard and jockeying for position.  My MS is always going to be different than your MS.  Not better. Not worse.  Just different.

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (4)
  • Dianna lyn
    4 years ago

    Dear Laura,
    I met a friend with a worse symptoms than what I had, last year. I regret to had been informed this year, he had passed away. What I mean about worse MS symptoms, is that he couldn’t talk without a slugged speak and I had to listen very carefully, also he was picking up his legs to put them in the vehicle. I think there are many different levels of MS. I honestly believe now that I have carried MS for a long time, longer than the year I was diagnosed, in 2007. Why, because my physical education teacher on high school seen the MS in me. Of course my parents brushed it off and was never tested. Therefore, I wonder if you have to be at a certain level of MS to experience this excruciating pain that I personally deal with on a daily basis? Anyways, where are the studies on that? Can’t help but wonder?

  • DrPatC
    4 years ago

    Laura,
    Your blogs always resonate with me, although it’s a snowflake illness many of the snowflakes have similarities enough for comparisons to be too similar too often! Although there are times when I think that comparisons can often lead to more stress. It’s often the case that when I listen to others with MS I feel guilty that maybe mine isn’t as bad as theirs and embaressed to tell them when I’m feeling okay just in case they are having a bad day. I’m sure others must feel this way too. Recently I spent a few days fretting about the fact that my (awful) neuro had told me for a 60 year old with MS I was doing very well. He was in fact only trying to make me feel better, but he only succeeded in making me worry that I was complaining about things I shouldn’t and maybe others were coping with my symptoms without complaint. It’s such a confusing disease in so many ways. Thanks Laura for always writing about the things we all worry about so eloquently.

  • But You Look So Well
    4 years ago

    I know my MS is not like your MS, and that my history of symptoms and coping mechanisms is unlike anybody else’s. But one thing I want to raise that has become dazzlingly clear to me over the year or so I’ve been involved with multiplesclerosis.net. No matter what your MS is like, there is an article or a blogger or an entry or response that will resonate with you. Multiplesclerosis.net is the best resource I have eer found to find out about symptoms, to learn empathy with others, to think of things I need to ask my new neurologist (appointment in two weeks!) and to refelct on this disease I’ve had almost forever! Hey, I’m still dancing, even if it wears me out in about four minutes, I can still cut an extremely small rug, and I rejoice at that. Thank you multiplesclerosis.net.

  • Laura Kolaczkowski author
    4 years ago

    Your reply makes me want to smile or tear up from those very kind words or maybe both. We are all so different – but yet we are so closely knit together by this disease. I am so happy you are finding value in what we do here – I know all of us who contribute to multiplesclerosis.net put a lot of love into the effort to share what we know and experience, with others. We sure do cover a wide range of experiences and topics, don’t we? thanks for taking the time to say such nice things -it makes me want to go and write more or join you in a happy dance. be well, Laura

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