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Spotlight: Living With An Invisible Illness

So many symptoms of MS whether emotional or physical are not visible on the outside. Let us know what it is like to live with an invisible illness. How do you describe what you're going through to friends and family?

  1. Most MS sufferers with 'invisible symptoms' should understand how lucky they are to ONLY have invisible symptoms. If only my symptoms were invisible. Like everything else; you don't realize how good you've got it, until things get worse. I am no exception. On my worst days, I always try to remember that things could be much worse. As my neurologist said; "Maybe if I had lesions in my brain, I wouldn't care that I can't walk." (He was trying to be positive and funny). It helped put my condition in perspective. I have always had the attitude to work on what's broke, and let the less important stuff go. It may not work for everyone, but it works for me.

    1. Hi Tim. Putting things into perspective rings so true. How symptoms impact each person definitely varies and some people definitely do experience very progressive symptoms that are very visible. And, sometimes depending on the type of symptom it can be more visible than others like physical symptoms compared to emotional symptoms. Everyone has a unique MS journey and we can't thank you enough for sharing here! - Kelly, Team Member

    2. Thanks Kelly. I'm just trying to shed a positive light on a very negative experience we are all having in our own unique way.

  2. I describe my MS as a defect in my electrical control panel. I say it is like when something is wrong with the electricity in your house. You never know which part of the house will have a problem, which is why MS can be so different in different people. When I am only using some of my power, I seems fine but when I try to use too much, can get easily overloaded and that is when symptoms act up.

    My most noticeable invisible symptom to others is my loss of the sense of smell. Recently, I was talking to a neighbor in her garden and she picked some rosemary and gave it to me to smell. That is when I told her that MS affects my sense of smell. I don't remember if she knew before that I had MS but it really hit home with her as we were standing there contemplating the delicious fresh vegetables that I can not really taste. My lesions are mostly in my brain stem, so they affect my cranial nerves. It is amazing how much is controlled by that small part of my body.

    1. An electrical control panel is a wonderful example for something so frustrating to explain to others who may have a hard time understanding MS and its impact! Smell is one that many do not even realize MS can affect. Thank you for sharing here, Nancy!!! - Kelly, Team Member

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