The Invisible Illness

Sometimes, MS is one of those diseases that is nearly impossible to hide. Whether we walk with a gimp or we use a wheelchair, it’s hard to act like it isn’t there. On the hard days, all I hear is “are you alright?” “do you need assistance?” or “what’s wrong with you?” On the hard days, I just want to disappear. On the easy days, I am just like everyone else–my disease is invisible, and I am unstoppable. This is awesome, right? Maybe to me and the people who know me, but to the people completely outside of my circle, I am just seeking attention because I don’t have a “real” illness.

Each and every one of us works hard to function at our best–whether it be for a wedding or just walking down the block. We don’t want MS getting in the way. We train, we practice, and we gather up all of the courage we have to make that goal a reality and when it happens, it’s truly an amazing feeling! But what feeling is more powerful–the feeling of finally having what feels like an MS-free day, or the feeling of discouragement when someone accuses you of not really being sick?

I was at my local grocery store just the other week and while waiting in line to checkout, the older woman in front of my spotted my medical ID bracelet. She smiled and politely said, “I don’t want to seem rude, but I have multiple sclerosis and was just wondering what your bracelet represents?” I smiled back and told her I had the same; we got into a lovely conversation about the disease and the wonderful community that surrounds it. She let me know that grocery outing was the first time she left the house without her chair or cane, and she felt so good to show off her working legs! I’ve never identified with a stranger more in my life. When I was heading out to my vehicle, smiling about how the world can bring people together, I overheard a woman berating someone else not too far away. When I tuned into what they were saying, my stomach dropped; I could hear her saying things like “it is so RUDE to park in the handicap spot when you are NOT disabled!” and “how inconsiderate of a person do you have to be, I’m glad I spotted you WALKING to your car!” I immediately knew who the recipient of the accusations was–it was my stranger friend from inside.

As an MS warrior, I couldn’t just stand idly by and let this happen. I worked my way over to where they were standing and tapped the woman on the shoulder. To sum it up, I flashed my medical ID bracelet, did a little jig, and told that woman to mind her own business because she has NO idea what others have to face on the daily. It got her to leave, but I don’t think she learned a thing. I hugged my stranger friend and told her to keep working her lovely legs every single day.

Others won’t always see it, but you always know it’s there; no matter what anyone says to bring us down, we continue to wobble right back up and stay strong because no one knows your battle but you. MS can be an invisible illness, but the days that it is, we rejoice, and that emotion will always be triumph over discouragement.
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Catherine Weston

Catherine is a professional in the medical marketing industry from Long Island, NY. She aspires to show the world that MS doesn't hold her back. She was diagnosed in 2014 and has been striving to help others overcome their fears and limitations since (she also loves sheep!). Keep up with Catherine and her adventures on her Instagram.

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  • Melissa (Mel)   May 30, 2019 10:10 PM
    Thank you for sharing your story. I had Bells Palsy in 2005 and then hospitalized for 9 days in 2015 with Transverse Myelitis which has left residual damage to my body/muscles and nerves. In the last 8 months I developed additional symptoms and noticed my health declining and going doctor to doctor. After 8 long months of per frustration I got diagnosed 2 days ago with MS. My Brain MRI showed 6 liaisons on my brain and everything added up now. I am now trying to research this disease/ embrace it to the best of my ability and do my best to have a productive and active life which I have missed out on the last 4 years. On a good day I actually get things least for a few hours and to see me you my never know that I had any illness. However a flare up and a bad day can send me to the ER/ twisted up in bed at home and/or having to use my walker. Flare ups come out of nowhere and can last 2 days to 2 weeks. I’m trying to educate myself on this illne and wanted to thank you for sharing your story.
  • Suzanne   Jul 5, 2019 7:56 PM
    I loved reading your story.
    In 1977 just after the birth of my son I was driving to my husband's job & had double vision. I tried my best to keep one eye closed and drove the 1/4 mile to the business. I went to park & due to the vision issue I ran into the building. I was upset & crying. After telling my husband what had occured we decided to wait & see what tomorrow would bring. I got in to a Dr that day, he sent me directly to the hospital. My memory is horrible so I don't know what happened there except I had an angiogram. Back then they didn't give you any medicine to calm you or anything. There was one person by my head just to talk to me during the procedure. One person on each leg helped hold my legs still while the Dr inserted the camera. It was the most excruciating thing I've ever encountered (& I had 4 children & been hit by a car). I vividly remember that. After awhile I received a call from the Dr telling me I had MS, they think. They sent me to a meeting of 12 Drs to discuss my symptoms, etc. After a very long drive into the south side of Chicago I was told the meeting had been cancelled and they would reschedule. I never returned. Never went back to the Dr. In January 1993 a semi hit my car. Eventually an MRI was ordered. The Dr came in & was clearly distressed. He said the MRI shows MS. I also had a severe damage to my spine. This was 3 years after the accident. I was sent to a nuerologist who prescribed betaseron. I took it as directed and my condition worsened rapidly. I became bed ridden for months. Lost my job. The Dr said keep taking the betaseron. I did. After awhile, again my memory fails, I don't know how long but it was over a year, I stopped taking it. Within a month I was feeling much
    better. So I stayed off it. Upon finding a new Dr he saw my injuries & did 2 surgeries on my cervical spine. I had also had 5 surgeries on my knees, 3 on my shoulders, 1 on my ankle. He sent me to the most wonderful nuerologist ever, Dr Barbara Jahnke. She was patient, kind, understanding, everything a depressed mess like me needed. We tried other therapies that my body didn't like, until I decided no more. She treated every issue I had, for 20+ years until she succumbed to cancer. She had invited me to stay in her home with her while I saw a chiropractor she used!! Who does that? I didn't do it, but it was the single most unselfish, gift I'd ever been given.
    Since then I've had many issues and cannot find a Dr who will treat me because "there is no way to distinguish which problems are caused by MS and which are just their own problem". What difference does that make? I've had a knee replacement and now waiting to see be a nuerosurgeon to have the many discs, or lack there of fixed. I have a good PCP, but she can only do so much as she is only a NPC.

    I still find joy in many of life's gifts. I have 4 kids, 14 grandkids & 10 great grandkids. (So far, 2 more due this year)
    Even though I have so many problems and medical issues that have gone untreated and become worse, there are so many reasons to see that being positive is the only way to be. I can barely walk a few steps, I also have severe lymphadema, which has hindered my legs working correctly, and I have to sit with my feet up always, but plugging away with what life has given me is not that different from what others endure. So for the most part I smile a lot and am very happy by nature ,(which was another reason Drs failed to see my injuries and their severity).
    Accept the things you cannot change.
    Do all you can to make life fun for all.

    No MS drugs for me, which may turn out bad in the future, but for now I'd rather not be sick & in severe pain from them. I don't know of any one else but a dear friend of my daughter who won't take the drugs. She is so much better off them also.

    I'd love to hear from others who don't take any MS drugs.