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Living with an Invisible Illness

Living with an Invisible Illness

Most people living with MS have at some point been told, “but you look fine,” and while that is intended to be a compliment, it can actually be quite frustrating to hear. Because so many of the symptoms of MS are not visible on the outside, those who do not have MS really don’t understand what it’s like living with this condition every day. Between muscle spams, vision problems, pain, fatigue, and more, the impact MS can have on a person’s every day life is profound. We conducted a large survey of people who have MS, and asked many questions about what it is like living with an invisible illness. Here are some of the highlights from what we heard from the community.

Living with an Invisible Illness


  • TracyShudo
    2 years ago

    Yes I have been diagnosed for 23 years and over that time only 5 in total have I looked like I have a physical condition. Hate being told I can’t park in the handicap spot. Loss weight 4 years ago when walking started to be a problem and Neurologist, said well Tracy you have gained some weight. My response was give me a break I am 50 years old. His response was well if he was carrying a 25 lb frozen Turkey with him all day it would be hard to walk and make him tired. I understood what he was saying so I took on the healthy way to loss the weight for long term. Well after you lose 50 lbs and people have not seen you for 2 years they come up to you and say how great you look. Well on the inside I suck, and when did it become that people that are a size 8 not 16 are healthy???? Hardest part is getting friends and family to understand when you look up and say we have to go now. They reply why we are still drinking and having a good time. Well all us with MS know or have small starts when we know we are going to hit that wall. We know we have to be at home and go to bed but other’s just don’t get it. BUT great news about the fatigue I have found this new power that I mix with water and it is brain food and within 10 mins I am wide awake. PM me if you would like more info. Thanks for letting me share.

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