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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.
May 27
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Answer Summary

Members responded warmly to the question about being afraid to tell others they can no longer do certain things, with many sharing that they... Read more

Members responded warmly to the question about being afraid to tell others they can no longer do certain things, with many sharing that they have learned to set firm boundaries without guilt and prioritize rest as an important form of self-care. A recurring theme was the difficulty of explaining invisible symptoms like brain fog and fatigue to loved ones, especially when those closest to them still expect too much. Several members encouraged one another to educate others about MS, let go of unsupportive relationships, and lean on this community for understanding.

A MyMSTeam Member

Shining Thistle and everyone else on here, don't be afraid to ask people, "What do you know about fatigue or exhaustion" or whatever symptom you're afflicted with. If they can't answer your question, you tell them, "If you ever experience it, you let me know how it feels for you." If they do and they still don't get it, don't waste your time, breath, words and energy on them.

May 30
A MyMSTeam Member

No Im not. I know my limitations and I'm not pushing myself if I can't. If other people don't understand then it's their problem not mine.
Alessandra

May 27
A MyMSTeam Member

For a long time I didn't know exactly what was wrong with me because nothing was showing up on any tests the docs did to see if I had MS. But before I received the diagnosis in 2003/2004 I was diagnosed with Fibromyalgia. Some of the symptoms from that were enough to prevent me to be able to participate in doing things with family and friends. Unfortunately, I would tell them I just couldn't make the outing, or whatever we had planned, and at first it was accepted but after a few times they would tell me that I didn't seem like there was anything wrong with me,like there was nothing wrong with me. After a while they stopped asking. It hurt at first but then I realized that if they really cared about me that they would still be my friend and try to understand. So this people I just dropped as friends. Now, if I tell someone that I can no longer do something with them because of my MS or some other health problem then if they have an attitude I just stay away from them and find new friends who understand. I found this to be a great site for folk who totally understand and know how we all feel as we walk through this disease. Don't be afraid to tell anyone because if they really care about you they will try/will understand. God bless you all! We support each other and strengthen each other because we know and understand what we are dealing with.

June 2
A MyMSTeam Member

No, never afraid, not ashamed to tell people I can't do things or go certain places. I and many of us would be filthy rich for every time I/we tell people I/we don't have the ability or capability to do particular things anymore. Their lack of understanding, let alone the ability and comprehension about age, time, deterioration of the body, etc. is just astounding.

May 30
A MyMSTeam Member

In do too politeness only lasts so long🄰

May 28

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Los Angeles, CA