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Do your family or friend's truly understand your MS condition?

I have a friend who continually makes rude remarks to me, for instance: How come you are not up at 6:00 a.m.? In the morning? Well, I don't function well in the mornings, they are bad for me, even through I try to. So, I tell her, it's one of my MS symptoms, and she still continues to complain about it. Then, at night, it takes me a long time to get supper on the table and she again continues to complain, "why do you all eat so late at night, I just don't get that?" Well, it takes me a long time to concentrate on planning my meal for the night. She tells everyone that we eat late.. So how do you deal with such a friend or family member who acts like this? And they are actually hurting your feelings?? Any suggestions?

  1. Hi Dianna,

    Thanks for reaching out and for being a part of our community. It can be so frustrating when those close to you don't understand everything you're going through and the impact MS can have. A few of our writers have written about this topic. You can find their articles here:

    - https://multiplesclerosis.net/living-with-ms/what-to-do-when-loved-ones-dont-understand/
    - https://multiplesclerosis.net/living-with-ms/well-you-look-good-understanding-that-you-dont-understand/
    - https://multiplesclerosis.net/living-with-ms/the-1-thing-you-can-do-for-someone-with-chronic-illness/
    - https://multiplesclerosis.net/living-with-ms/invisible-illness-pain-not-looking-sick/

    Know you're not alone and the community's always here whenever you feel like you need support or just a place to talk.

    Wishing you the very best!

    - Kelly, MultipleSclerosis.net Team Member

    1. I've struggled with judgment from so called friends for a very long time until I realized that I don't have to make them understand my disease! True friends and family don't judge they listen and try to understand the best they can. The energy I was waisting by focusing on and there awareness was not good for me and brought unnecessary negative feelings and unwanted stress into my life. It's hard to distance from people you care about, but I decided that my health was number one. What good am I doing by making myself sick and at risk for relapse trying to make someone understand the most difficult, and invisible disease? I have no issues talking about MS and how it affects me to anyone. I just no longer feel I have to be judged or looked at like I'm crazy by anyone... I still have many close friends and family and I don't miss the ones that have gone away. Surround yourself with understanding people with positive things to say and provide for you in your life. Take care of you!

  2. My family doesn't understand or care to in my opinion I have rrms my mother makes doctors appointment for me that I never go to cause I don't know these doctors but anywho she tells me I'm not doing all I can to help myself and I don't do my hair and makeup like I use to that my boyfriend will leave me and a lot of other stuff

    1. Hi Tiffany -
      Thank you so much for sharing. We are sorry that your family doesn't seem to care or want to understand MS. It seems as though your mother is trying by getting you doctor's appointments, which is definitely a step in the right direction! Please know you're not alone here. Thank you for commenting!
      Meagan, MultipleSclerosis.net Team Member

    2. I also have RRMS and I understand what your saying. If this diagnosis is fairly new it take time to take it all in. You should see a doctor, but I agree that you should be a part of that process entirely. Make sure your mom knows that hearing hurtful things like she said about the way you look causes stress and stress is the #1 trigger for a relapse! Stay strong and committed, get educated about the illness as much as you can and surround yourself with positive people and thoughts! It's going to be ok, just take steps at your own pace towards wellness!

  3. I'm not sure I fully understand, I've just been recently diagnosed. So, I can't expect my family to understand. My husband has been very accepting through all of this so I don't let myself get stressed about everybody else. Look for at least one person in your life who can support and understand what you're dealing with. Then let the others take their time.

    1. Hi Melack,
      We are so glad that your husband has been extremely supportive and accepting through this difficult time you're going through. Please know you're welcome here any time. Great advice!

      Meagan, MultipleSclerosis.net Team Member

  4. Tiffany
    Go to the Doctors.
    I really didn't know any neurologists or even family doctors before I got MS. But I knew they knew more than I did about MS and stepped up and went to what seemed like thousands of them, probably 5-6 in reality, and though I wasn't comfortable going, I did find ones that helped me.
    I found that I first had to understand ME and what I was going through before I could attempt to help others understand me and MS.
    It's a rough journey and it really sucks but it can't be done without doctors putting you on the right path.
    The rest will follow, family and friends may or may not ever understand fully but knowledge is power for you over MS.
    Its been 12 years since I was diagnosed and I'm still not sure if anyone understands what its like on a daily basis but with professional guidance it's not as bad as going it alone.
    There are thousands of us who will talk to another with MS about MS, reach out if you need to. The times I have, have made it easier.

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