Skip to Accessibility Tools Skip to Content Skip to Footer
A group of differently abled people sitting a a table eating together.

The Real Diversity of MS

Multiple Sclerosis is a disease that affects a wide range of people. Folks of every race, gender, and walk of life get diagnosed with MS, so yes, it attacks a diverse demographic. However, that’s not the diversity I’m going to talk about here. When it comes to MS, there is another level of diversity that needs to be recognized: the severity of one’s disease course. Unlike many diseases, you can line up twenty people who have all had MS for the same length of time and they may all be having a different experience. That level of diversity within those affected by the disease can present a number of challenges to those living with it.

Many of us experience dramatically different courses of the disease

If you’ve ever been on social media or to a support group for those with MS, it becomes quite clear that many of us experience dramatically different courses of the disease. Some people experience pain, some don’t. Some are plagued by optic neuritis, while some never have any visual symptoms. You can even find people that have had the disease for the same amount of time and have taken the same medications and one will be in a wheelchair, while another just completed running a 5K. With Multiple Sclerosis, there is a massive pool of possible symptoms that can be common, but finding people with the exact same symptoms and severity isn’t easy.

Treatment

Imagine trying to treat a condition where everyone can be so similar, yet so different. Treating multiple sclerosis often requires a “try and see” approach. What works for one person may not work on the other, but the only way to know for sure is to try it. That leads to a lot of frustration on the part of both the doctor and the patient. There are treatments that work for some people, but there isn’t a standard that works for everyone. When you think about something like cancer, you often think about chemotherapy, because it’s widely used and can be very effective in many cases. We don’t really have that with MS because of this diversity. Aside from trying to halt the actual disease progression, you have to factor in the variety and severity of symptoms people experience, and that’s a whole other level of treatment to factor in here, because treating the disease and the symptoms are two related but different goals when it comes to MS. Treating to slow disease progression isn’t done to help the symptoms you already have.

Finding support despite a lack of common ground

Another huge challenge that those with MS face because of the diversity of their symptoms and severity, is when it comes to finding support. One of the key components of any kind of support group is having something in common, but what happens when that thing in common makes everyone so different? You often see a lot of in-fighting and hurt feelings in MS groups because of this diversity. It can be very hard for folks who have something but have it so differently. I’ve seen arguments break out because one person who’s had a relatively easy course of the disease proclaimed their attitude is why they are so healthy, while another person, who’s had the disease the same length of time, but had a much worse course and is confined to a wheelchair, questioned it. 

Pushing an agenda

People with the disease forget how different it can be for others. That person with the wheelchair has had every bit as good an attitude as the person with the easier disease course, so it becomes extremely insulting to those who have hard a harder course of the disease. You can sometimes start to see a tremendous amount of pain and anger when those with MS start comparing their conditions, with both sides forgetting just how different we all are. Trying to champion any reason for “success” can be very dangerous when it comes to MS because we are all affected so differently. (On a side note, wow, there are so many people trying to push their reason for success, the way to “beat” the disease. Please just stop, we are all so different, if you want to actually be helpful to someone with MS, just be there for them, don’t try to push an agenda.)

Many similarities but also many differences

The diversity of symptoms and disease severity is something we all need to keep in mind when it comes to multiple sclerosis. There are many similarities, but also many differences. That’s not only one reason it’s so hard to treat this disease, but also why it’s hard to live with it and find support for it. The diversity among us is an aspect that I think too many forget.

Thanks so much for reading and always feel free to share!

Devin

My Other Articles On MultipleSclerosis.netFollow Me On Facebook

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

  • chong61
    4 months ago

    Devin,
    When I first found this site and your article about fatigue was my first read. I remember saying to you “finally someone on Earth knew what I was going through.”

    With every item you post is as if we are experiencing a lot of the same and that gives me comfort because I have never found anyone that understands, no matter the level of love they show me, they just don’t understand.

    Please keep your articles coming, each and every one lifts my spirits.

    Arvilla

  • Azjackie
    4 months ago

    Devin you’ve nailed it again. It’s as if you’ve read my mind. How a disease can be so cruel I’ll never know. Hundreds of thousands afflicted with some with similar conditions and others completely different yet diagnosed with the same disease. Often I think how will there ever be a cure? What works for one may not or probably not work for another. Darn the trillions and trillions of axons and oliogodendrocytes that have to work in harmony to prevent disease. You’re right just listen to eachother and offer support.

  • Yoshitail9
    4 months ago

    Devin
    Great article. So true. The only thing we all have in COMMON is those two alphabetic letters……..M and S

  • SueK
    4 months ago

    Excellent point and article! It is so true that common ground is hard to find in support groups. You join looking for a safe place to ask questions and share, and often are blindsided by palpable anger and attacks. While the chant continues, “You don’t get it, until you get it”, I find there is just as much, if not more, dissonance between MS members comparing notes and becoming hostile towards those whose experiences differ from theirs. Several with more aggressive forms of the disease lash out at others saying, “My, my. Aren’t you the lucky one having it so easy. Are you certain you have MS?” Or they terrorize the newly diagnosed saying they will become profoundly disabled and die of complications. While may hold true for a minority, it is cruel to suggest such things to someone that is still in shock, desperately trying to understand their dx.

    The diversity in attitude also produces a battle ground. Those on DMDs are harassed by those claiming diets and supplements alone cure MS. Or the “conspiracy theorists” tell everyone the government has a cure but is withholding it, poisoning us instead with one of dozens of substances they claim cause MS. The latest claim was that the government feeds pigs chemicals that trigger the disease. No use arguing with them. Their minds are firmly made up. And while it has been shown that having faith or any sort improves outcome, support group are nit the place to judge others based on religion or lack of.

    Lastly, outlook, mood and mental lability can be the great divides. Some are easily angered when they encounter those with a positive attitude while they rather dwell in the darkness. Discussions can feel as though you are walking on through a mine field, trying not to inadvertently set others off and finding yourself caught up in a battle. I have a background in psychology so for me it is a bit easier diffusing the tension, but many do not understand that MS causes mental and emotional lability. And as it typical with conflict in a social setting, a mob mentality can develop as members take sides.

    We all experience different symptoms, progress (or not) at a different pace, view our lot with different eyes and perspectives, and accept our dx, adjust and adapt, on our own terms and schedule. If only more people understood that those whose journeys differ from our own have a lot to offer others, and while unique, it is NOT intended to be a competition. We are all in this boat together. Let’s try harder to accept our differences and get along.

  • StephanieEVC
    4 months ago

    The pigs testing is just one of my paranoid thoughts. Sometimes I think if I wear a different color earrings or shirt it will make my MS internal cooking feelings worse. If I can’t finish my weights or stretchs I’ll become a complete stiff zombie not just these useless legs and arms but the whole body. The sudden ‘sparks quick zap painful buzz’ sometimes hits me in the limbs and head and I think of the internet WiFi and wonder if it is these wireless systems that are frying my insides. I can’t even lift the 3lbs today…

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @SueK, all so very true!

  • StephanieEVC
    4 months ago

    Dang Devin your good!!! You make do much sense. I’m in sooo much pain pain right now my legs and arm feel like there in a deep fryer inside. I have muddled conflicted thoughts and I do have to admit my guilt, I can’t help but to compare not only with others but myself cause how can I walk almost normal for a split second from the elevator to the door then hobble and cook on the inside once I’m in…

  • Devin Garlit moderator author
    4 months ago

    Thanks so much @StephanieEVC! Ugh, a deep fryer inside, that speaks to me. I know that burning feeling is something I know all too well! Hang in there and thanks for chiming in!

  • Harry
    4 months ago

    Devin or anyone else follow any certain diet. I cut something’s out but if you try to follow the 6-8 different diets out there it becomes very confusing.

  • Poll