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But I’m the One With MS

Living with Multiple Sclerosis can be very challenging. It’s a diagnosis that can be devastating, not only to the person with the disease, but to their close friends and family. I would much rather be in my position, as the afflicted one, than that of the friend or family member. It’s incredibly hard to watch someone you care about battle an incurable illness, that’s something that no one wants to experience. That said, there are times, when family and friends can be a little over the top with their grief in public. Some are genuinely upset, some need to be the center of attention; either way, it’s hard on those of us with the disease.

Sympathizing with friends and family

I’ve always thought, even from the early days of having the disease, that I’m glad it’s me that was diagnosed and not a member of my family or a friend. I’ve always thought, “I know I can handle this, it’ll be OK”. There is also something to be said for being the one in control. OK, well, control is obviously not the right word, because as I’ve said before, MS takes away a lot of our control. Still, I know that if it was someone else important to me with the disease, I’d feel absolutely helpless. So I very much sympathize with those who have been upset by my diagnosis and the havoc that it’s wreaked on my life (and theirs). I really would hate to be in their shoes.

So I understand how it’s difficult, however, I occasionally encounter a situation that can make me feel, well, bad. I have had people, that fall into that family and friends category, seemingly over-grieve about my condition in a public forum (when talking to someone in person or on social media). Now, I’m a big believer that everyone deals with things differently, everyone is entitled to grieve about something in their own way. After all, we can’t ever actually be in someone else’s shoes. That said, it can feel incredibly painful to hear (not to mention how awkward it can make me feel).

A martyrdom complex

I thought I must be alone in this, but I’ve talked to others who battle a chronic illness, and more than a few have encountered similar situations. When discussing what they thought about it, some thought for sure it was genuine and the friend or family member really felt that awful about them being sick. As I’ve said, I completely understand how bad it can feel. Others though, seemed to think that the person they overheard was doing it because, whether they realized it or not, they enjoyed the attention and sympathy. Those people certainly do exist. There are people that need to latch on to catastrophes, whether their own or someone else’s, and play them up. If you stop and think about it, you probably know someone with this type of martyrdom complex.

Needing support

The reasons why someone acts this way are irrelevant for the purposes of this discussion. Whether it’s genuine care or some case of martyrdom, it still impacts those with the actual disease. While we want people to care about us, sometimes we also need them to be supportive of us. There are many times when people take our situation and make it about themselves. They can also make it so emotional and so devastating, that it becomes the exact opposite of supportive. We start to feel worse than normal, like we’ve brought this upon them. We start to feel bad for them, even though we are the one with the disease. That kind of messes with your head a bit.

How to help

Again, I understand how awful and grief-filled life can be for a friend or family member to have to deal with an incurable disease, but there are times when we need you to suck it up a bit for us. Particularly in a public situation like I’m discussing here. Yes, our lives can be very hard, but we don’t want sympathy, and we also don’t want people to think of us that way. If you truly feel bad for us and want to express it, share something from this website, share information about MS. That really is the best way to help people like us. Not only will you be helping us and others with the disease, you can hopefully assuage some of your own despair by knowing that you’re actually doing something, actually helping.

Thanks for reading!


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


  • lightweaver
    2 years ago

    After all the years with MS,I wish all the people who were there to begin with were here now. I am now housebound and it is lonely. I have 3 family members who come occasionally Yes people do make MS about them..

  • potter
    2 years ago

    My husband was the only person I knew that was upset by my diagnoses and he doesn’t show his feelings very well. Every one else said “I’ll pray for you” or nothing bad is going to happen to you. Those people slowly pulled away, out of my life. Thankfully my husband is sticking around through the best and worst of it. Potter

  • LuvMyDog
    2 years ago

    I guess your husband is a decent person compared to all the so-called friends who were going to pray for you.

  • LuvMyDog
    2 years ago

    I was brought up by a pretty tough and strict person. You didn’t cry or whine, you learned from every experience good and bad and you sucked up the bad stuff, went on with life. As for being the person with MS….I am the person with MS.
    When I was younger I helped take care of my grandmother when she got ill, I helped my mother with her problem, I took care of my uncle in the last 8 months of his life, I took care of 5 of my friends when they got very ill, one of them died in my home.
    I would much rather be the person taking care of a friend or relative than the person with this stinking disease.

  • 1ucsdxw
    2 years ago

    As a family member/former care giver, is it possible to also write an article?

  • Alina Ahsan moderator
    2 years ago

    Hi 1ucsdxw! I just wanted to reiterate Devin’s point about being able to share your story as a caregiver and provide some other caregiver spaces on the site! We also have a forum for caregivers: as well as a special section on the site with articles specifically for or about caregiving: We know caregivers are a HUGE part of the lives of their loved one with MS, and MS affects more people than just the patient! Thank you for being part of our community, too!
    -Alina, Team Member

  • Devin Garlit moderator author
    2 years ago

    Hi 1ucsdxw, I believe anyone can submit to the Stories section. I know other caregivers have in the past:

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