Any tips for getting others to understand?

After years of wondering what was wrong with me, I was finally diagnosed with MS in January. I am still trying to wrap my head around this – and am surprised at times to find things like brain fog and extreme fatigue are very much a part of the illness. How do you get family, friends and coworkers to comprehend what you yourself are struggling with? I do not try to pawn off my workload on anyone – but on days I am struggling – my family especially seems to get offended or decide to lecture me. Friends get ticked off that I don’t commit to plans, or sometimes cancel at the last minute when fatigue overwhelms me. Is this just me? I really, really have tried for years, long before the diagnosis, to seclude myself on days when I am having a really difficult time concentrating and frankly, just being. I have tried to explain things as I am learning about this illness. How can I make them understand when I myself am just comprehending how this can affect so many facets of life?


Community Answers
  • SuzyF.
    6 months ago

    Dear Cindy,
    Many who read this have “been there” with our many “invisible” symptoms of this “life-changing” disease. (After her suggestion to “take a nap”, I told my mom once I was sooo tired if she offered me a million dollars just to walk to the corner I’d look her straight in the eyes and tell her to keep it as I couldn’t make it that far) When I was first diagnosed 33 yrs. ago, I was advised to “get important things done @ the beginning of the day and spend the rest of the day taking care of yourself.”

    You can find awesome resources in THIS site as well as @ the National Multiple Sclerosis Society – be sure to sign up for their magazine (incl. past issues in their library) AND find out the location of a local support group. (A man in ours was the catalyst for his wife’s coming so they BOTH could learn more about the “dis-ease”) These people have the very best senses of humor of anyone – as we would often tell ourselves, “Oh, it’s ALL in your head!” which it IS, literally.

  • Christine F moderator
    8 months ago

    Hi @CindyG. I am sorry for your recent diagnosis but am so glad you reached out here. It can certainly be daunting when you are newly diagnosed. This is just one of many pieces with encouragement for the newly diagnosed that you may find helpful: https://multiplesclerosis.net/living-with-ms/a-letter-for-the-newly-diagnosed/. Another piece I wanted to share has some tips for the newly diagnosed: https://multiplesclerosis.net/living-with-ms/tips-for-the-newly-diagnosed/.

    Please know you do not face this journey alone. Many community members have mentioned that sharing articles, like the ones you will find on the site, have helped friends and family gain and better understanding of MS. Please don’t hesitate to reach out if you have any questions or concerns. We are here for you anytime and are happy to help in anyway we can!

    Best, Christine, Multiplesclerosis.net Team Member

  • freedom
    8 months ago

    I understand and I’m sorry for your diagnoses. It takes a good while to wrap your head around this disease and how it affects you. Be kind and gentle to yourself. As far as friends and families that can be hard. Because sometimes we appear to be okay and we are really not okay. It takes educating them if they are willing. I have been ex for 9 years and I still feel bad about cancelling plans etc. It took me a while to understand that my friends and family were sometimes more afraid of disease than I was and that it hurt them to see me suffer. I find that even to this day it’s hard to communicate. But know this it can get easier and as you learn your limitations you will be able to express them. Peace and love to you.

  • Share Your Answer

    Poll