What You Wish They Knew About Your MS

Many people have heard the words “multiple sclerosis” before, and probably know it’s a chronic condition, but so many do not know what it really means to have MS. We asked our community at MultipleSclerosis.net “What’s one thing you wish more people understood about MS” and the responses were phenomenal. Below you’ll read real experiences from people just like you that start to paint a picture of what MS is really like. These are the things people should be aware of; this is how we spread true MS awareness!

I’m Not Drunk!

  • My memory is not always good! My husband and children understand and are patient, but people who don’t know look at you like you are drunk or high
  • She’s not drunk. She doesn’t even drink. It’s the MS that makes her off balance sometimes
  • I am not drunk, I am not dumb, I am not lazy – I have MS
  • Don’t tell me I seem drunk when I trip – It’s not funny

I Miss My Active Lifestyle, Too

  • If only others understood how we miss our active life before MS. It’s bad enough that we often feel like a burden, being treated as one is pretty much the worst feeling
  • Sometimes I feel depressed not being able to do what I used to be able to do – others just don’t get it
  • People always knew me as being active, and now they never see me. I just wish they would come by sometimes. All I need is to know someone out there cares

When I Say I’m Tired, I’m Tired

  • When I say that I have to go home early because I am tired, I am really tired. It´s not because I am lazy, it´s not because I am bored or boring, it’s because I am tired!!
  • When I say I’m tired, I’m not being lazy. And when I say my body hurts, Aspirin will not help
  • I wish they understood that my tired is not like their tired, and my pain is not like their pain
  • Just because I look healthy does not mean I am and when I say I am tired and need to sit down, it’s not a joke! 

Every Day, Every Minute, Is Different

  • I wish they understood that every moment is different. I can be good one minute and not the next
  • I wish people understood that my mind and body change every moment of every day
  • One minute I could be fine, but then next I’m not. I put on a brave face, but don’t assume I’m “fine”
  • Don’t ask me how I am if you don’t really want to know

How about you? Do you ever feel misunderstood? What do you wish more people understood about life with MS? Share this article and your own stories and experiences to spread the word about what it really means to live with multiple sclerosis!

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Comments

  • Dana says:

    I can’t even have a conversation with family or friends without it exhausting me. My brain just can’t process too much info at a time. My church friends don’t understand why I can’t go to lunch with them. After all, they say I look great! What they don’t understand is that I was fortunate to have been able to make it to church and that I will have to rest for hours when I return home. I grieve my former life

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