How can I better explain MS to family?

My family just doesn’t understand everything I’m going through.


Community Answers
  • AMAMS
    1 year ago

    Hi, and this is going to sound tough and its more about me being tough than my parent who had MS (prior to me). So apologies if this hurts as I don’t want it to.

    I have to say when my parent had MS initially it was something I didn’t want to know about. Oh I heard what she said, however its like most events/illness it has nothing to do with you right? it only happens to others.

    So I would assume in your case it could be the same – they don’t want to even think it could be them or happen to them (as that’s for others, right?).

    If they stay away (mentally or physically) they will be “safe: from its effects or even having to acknowledge the illness.

    As in some cases people do not have the wheelchair or stick and therefore they look “normal” which can mean the need to treat us as so. Maybe as they can’t see a cast or bandage they assume you are all A ok, they want you to be A ok and therefore they have no idea how otherwise to be. Any illness is confronting and some just can’t see themselves as part of it or even something that is on their agenda. Push it away and all will be good. Down deep inside maybe there is a fear this illness may come their way – it did in my case. So now I understand, I didn’t before and frankly would rather not now – however I have this. Maybe they are like I was, ignorant to begin with, horrified that this could be in the family, glad at that time it wasn’t me – and then OMG I’m the lucky one in the family, it got to me too.

  • Erin Rush moderator
    1 year ago

    I am sorry your family doesn’t understand your diagnosis. Oftentimes, it can be hard for family and friends to fully grasp what a diagnosis like MS can mean for an individual. You may see if they would be open to coming to one of your doctor’s appointments or attending a support group with you. One easy way to educate those around you is to share information like this easy-to-understand summary of MS written by our editorial team — https://multiplesclerosis.net/what-is-ms/. Sometimes, it’s easier for people to learn what you are going through by reading stories and articles written by others dealing with MS. You might find this article from one of our contributors helpful as you try to educate those that love you about your experience with MS — https://multiplesclerosis.net/living-with-ms/what-to-do-when-loved-ones-dont-understand/. You are always welcome to share any of the information on MultipleSclerosis.net! And please, know you are not alone. Many in our community can empathize with you. Thank you for your question and for being a part of the MultipleSclerosis.net community. We’re glad to have you here! Best, Erin, MultipleSclerosis.net Team Member.

  • Devin Garlit moderator
    1 year ago

    I have found that it’s sometimes easier for friends and family to understand what we go through if what we talk about it backed up a bit by someone else. The thing that brought me to MultipleSclerosis.net was that I was able to find articles explaining what I was going through and then share them with my family, I’d then follow it up and say I experience this too and we’d talk about it. I found this method of sharing someone else’s experience to begin the conversation to be very helpful. I think sometimes it’s just easier to start off with them seeing that this isn’t just you. I’ve also found a lot of articles with people describing things in ways I never thought of, that’s always helpful too!

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