Do You Keep Your Multiple Sclerosis to Yourself?

Turns out that lots of us don't really talk about our MS to many people.

Handicapped lady on a fock
Tony Barber / Getty Images

I don't really talk too much about my multiple sclerosis to other people, mostly because I find it boring. I enjoy communicating with other people with MS, and this website is a lovely outlet for that, but I no longer feel like other customers at Target or the waitress at a fancy restaurant needs (or wants) to hear about my MS. 

However, it was only after I asked the question "Who do you talk to about your MS?" to other people with MS, that I found that most people (myself included) really don't talk too much to anybody about it.

Besides writing the articles and blogs on this website and some other writing that I do, I don't really mention my MS to anybody, except to tell my husband and other family members when I need a little help doing something. Rarely, he and I will have a conversation about how hard it is for both of us that I am unable to do certain things, but mostly we just soldier on and deal with the challenges as they come.

I also realize that many of us have stopped talking about their MS because they have heard too many insensitive or downright stupid comments. If you'd like to check out some "doozies," take a look at Readers Respond: What comment about your MS was the dumbest?

This is what other people with MS had to say about whom they talk to (or not) about their MS and why (or why not): 

  • I feel as if I haven’t yet found a really good place to talk about my MS and symptoms especially since having my son a year ago. I have connected with a few groups online but still it doesn’t feel quite satisfying. I tend to only reach out when I am feeling really upset and tearful about the MS. I do tell my partner about any symptoms but I do feel as though I am grumbling and I don’t like that feeling. But it does feel important to be able to talk about it. I really appreciate reading other people’s accounts of the difficulties of living with MS so that’s why I like this blog for one.
  • Honestly, I have nobody I can talk to about my MS. Nobody gets it, so I figure why bother. My teenagers just think I'm complaining if I try to talk about it. I was diagnosed 6 months ago and I’m very symptomatic. I’ve found a couple of websites with chat rooms.
  • I’ve been diagnosed 5 years. I never talk to anyone about it. It seems pointless. Everyone has their own crosses to bear and few really know what MS is, much less transverse myelitis. I told my very immediate family at the beginning, as that is appropriate, so they understand why I choose not to do some things I used to do before; and it has never been discussed amongst us since. I especially have not told my in-laws; my brother-in-law has a big mouth and I really don’t want to be treated differently.
  • I try not to bring it up anymore to strangers, but I find myself doing just that on my “bad” days. Other than that, my friends don’t want to hear about it. My cognitive problems have affected my friendships and I no longer contact some of them as I was told that I repeat myself. This has been harder than the disease itself.
  • I tried going to a group for MS, but I felt very out of place as I wasn’t in a wheelchair and couldn’t relate to what was, or wasn’t, going on.
  • It can feel very lonely sometimes with all the weird and wonderful symptoms that can’t be explained.
  • On the beginning, I told my friends that I was diagnosed with MS and after the initial comments I received I stopped talking about. I found out that most people do not understand what we go through on a daily basis and everyone can see how my mobility has gotten worse. When to ask how I am doing I just say that everything is status quo and leave it at that.
  • I’ve pretty much given up discussing this with others who do not have the disease. It’s pretty much pointless because it is too difficult to describe. Plus I have found that certain people think that I may be exaggerating or “faking” my symptoms. So, I just hold my feelings inside for the most part.
  • There really is no one to talk to because I am trying so hard to maintain normal work status, so I can keep benefits, so I can pay for the meds. A few people know but I do not want to be the focus of attention. Last time I went to the eye doctor, the receptionist asked, “How the MS thing was going…are you better yet?” It’s not the popular disease so I just keep quiet. It makes people uncomfortable to know we do not get better…yet.
  • Have been diagnosed MS for 30 years and horribly undiagnosed for 10 years. I lost my husband and my self-esteem. You may be surprised to know that most people don’t know what MS is. I get replies liked “Oh, that’s what Steve Hawking has.” I can’t be bothered explaining. 
  • I didn’t do it on purpose, I just didn’t tell anyone except those close to me for a long time. No reason, it just didn’t seem anyone else’s business. Now in my 50s I am on a disability pension, spend a lot of time in bed and am homeless, staying at my 80-year-old mother’s home and I do tell some people when necessary.
  • When I went on Tysabri infusions I was astounded at how good it felt to talk to fellow MSers [at the infusion center]. I stayed on the drug cause I loved going in once a month to chat with them, hear their stories, see their improvements, laugh together. I miss that now and asked if I could go in and just have a saline infusion.
  • I agree with most commenters. The less said, the better. Because many of us have “invisible” symptoms, or we can efficiently mask them, most people are wrapped up in their own lives and don’t really care. So, carry on, all! Vent when needed, ask for help when necessary, be strong and self-reliant, avoid being a pain. Chances are, other folks have stuff they are dealing with, too.
  • Like others answering this question, I have no one to talk to about MS that would understand, without those people telling me of their aches and pains, some saying they think they have it, or know someone who has it. I told my brother when I was first diagnosed in July 2007. My last invitation to visit with him was in December 2007. I call him now and then, but he has basically ignored me.
  • I have no one to talk to about my MS. If I do start talking about it, people just stop talking to me (including my husband), in the hopes that I will stop talking. I do attend a self-help group, and I so look forward to that each month because that is where I can relax and be understood. When someone in a group gets upset, you can count on several voices saying, “That is what we are here for!”
  • I hate talking about MS and have done very little “sharing” about my MS. Few people understand its complications, and especially the fact that almost all people with MS have a different combination of symptoms. People seem happy to proclaim that you look so good and seem to handle your MS well. Little do they know what we struggle with daily and how it is difficult to remember what “feeling well” for me feels like now.  
  • Well, as they say, misery loves company. While I’m sorry to hear that so many of us are in the same or a similar boat, it seems to be another somewhat common thread. For me, it’s a killer not being able to talk about it. I guess I’m a communicative type of person and I also believe that if you want to talk about it and can’t, which is my case, it becomes bottled up inside, that isn’t good. For me, like others, I keep it all to myself. I understand that others have their own problems and not everyone (well hardly anyone) wants to hear about it or cares.

Bottom Line: It appears that, like me, some of us do enjoy talking to are other people with MS. If you can find an MS-related group to attend, you may want to give it a try. You may also want to try getting your feet wet with an online group at first to see how that goes. 

Read more about talking about MS and MS support groups:

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