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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What has been your experience when others know of your MS?

A MyMSTeam Member asked a question 💭
Surprise, AZ

I was dx a little over a year ago and honestly, I plan on telling absolutely no one else about it. I made the mistake of telling only a few people about it and all I’ve gotten is either ghosted or dismissed. After my mother found out, I never heard from her again. I did see her last October at a birthday party and she asked me, “Well, are you okay?”
🤣 She acts like I have a really bad cold or sprained my foot. I literally have a chronic, inflammatory disease in which there is no cure for. I told… read more

May 22 (edited)
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A MyMSTeam Member

My family is very supportive and since I am a speaker for MS and MS patients I tell everyone and have since my diagnosis. It has been mostly positive but their are always uneducated people out there.

May 22
A MyMSTeam Member

My experience has been similar to how you describe @A MyMSTeam Member. It’s really hard to understand the responses of others. When I was working I had some supportive colleagues, but I never hear from them or any old friends now. My mother is disinterested and even told me once “I don’t care” when I was trying to explain.
I don’t tell people any more. I keep those few who do care close. Personally I have found more support here which I guess is because we all understand. I am extremely grateful for that support. Take care, you are not alone 🤗💜

May 22
MyMSTeam

First, the frustration here is completely valid — and honestly, "I have a bunion" might be the most underrated MS coping strategy ever suggested. 😄

What's been shared is something so many MyMSTeam members relate to deeply. The dismissiveness, the unsolicited comparisons, the people who suddenly vanish — it's a painful and Show Full Answer

First, the frustration here is completely valid — and honestly, "I have a bunion" might be the most underrated MS coping strategy ever suggested. 😄

What's been shared is something so many MyMSTeam members relate to deeply. The dismissiveness, the unsolicited comparisons, the people who suddenly vanish — it's a painful and unfortunately common experience after disclosing an MS diagnosis.

A MyMSTeam member put it plainly: "People don't understand because they can't physically see how you're affected by MS. That's frustrating because they have no clue how lots of people with MS secretly suffer." The good news? There's no rulebook on who to tell or when. Many people with MS choose to be very selective, and that's completely okay. Here are some approaches others have found helpful:

- Wait until you're ready — One MyMSTeam member waited a full year after diagnosis before telling close friends, wanting to understand their own MS first
- Control the details — Some people share only what's absolutely necessary and nothing more
- Redirect the conversation — Others prefer not discussing MS at all with loved ones, choosing to focus on enjoyable topics instead
- Use trusted resources — Pointing people to reliable MS information can reduce the burden of having to educate others yourself

The drop foot situation is real though — visible symptoms do make things trickier to navigate. Having a simple, low-effort explanation ready (bunion or otherwise 😄) can take the pressure off when you're just not up for the conversation. Ultimately, this is entirely your decision. Only sharing with people who have genuinely earned that trust is a completely reasonable boundary to set — and protecting your emotional energy is just as important as managing your physical symptoms.

You deserve support that actually feels like support. 💙

May 22
A MyMSTeam Member

I found that most everybody pulls back. You really learn who cares about you with this disease, and unfortunately it’s almost nobody.

May 22
A MyMSTeam Member

Moe and everyone on here, times have considerably and drastically worsened and will get worse. Pick your battles yet don't give up in trying to find someone who will truly accept and care for and about you. Be wiser and more discretionary as to who you talk to about MS. In the meantime, continue to make friends on here and know that you have too many people who are lonely and wanting to be noticed for them, not for what they're afflicted with.

May 22

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