Living with MS involves ‘invisible’ symptoms that are hard to explain

Acceptance means understanding that MS is an endless battle

Beth Ullah avatar

by Beth Ullah |

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The “invisiblesymptoms that are common with relapsing-remitting MS and many other chronic illnesses can be the bane of our lives. It’s difficult enough to manage them, as they’re constantly fluctuating like a changing tide. But in some ways, it’s even more difficult to explain them to others.

The effect this has on our personal relationships can be the hardest part for me. The reaction of family, colleagues, and friends to my MS diagnosis was frustrating at the time for many reasons. One thing that particularly stood out was that I looked fine and healthy on the outside, except for the occasional myoclonus, or sudden jerking spasms. Other than that, my symptoms were all invisible (until I experienced paralysis 18 months later).

I’ve since come to realize how difficult it must be to understand something you can’t see. I barely understood it myself.

I felt like a hurricane was tearing through me. My nerves were becoming raw and exposed, and I grew increasingly out of touch with the world around me. I’ve tried for a long time not to worry about what people think of me, but I can’t say I’m entirely there yet.

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MS also causes me less-than-dignified problems, such as bladder and bowel weakness. This is very difficult to deal with, especially when I’m out in public.

Additionally, mobility issues come into play. It’s become apparent to me that the body’s core is an important factor in moderating our excretion systems. I use a wheelchair and a mobility scooter, but when I occasionally walk around and my core grows tired, that’s usually when bad accidents happen.

My mobility is tied to a fluctuation of balance issues, spasms, spasticity, and numbness, which vary by the day, the hour, and even the minute. For example, I’ve arrived at the doctor’s office with one set of symptoms only to see them change by the time the doctor performed neurological exams. It’s exhausting.

One important step forward is accepting that living with MS is an endless battle. Understanding the nature of the beast that is MS can help us eventually slay this dragon.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Jamie Best avatar

Jamie Best

I so feel for you in this never ending battle that we have to face. Your post resonates with me, only my bladder issues are severe hesitancy which again can be a bit of an embarrassment when out of the house as, as a male, the urinals are simply not an option as I could be stood for 5 minutes or more before actually going. Nothing looks weirder than a man just stood at a urinal while other more blessed gents come and go at ease

June Liggins avatar

June Liggins

Great post thank you. One of the things OI really struggle with - and you allude to it in your post - is how even Neurolologists seem to struggle to understand how difficult it is to give a comprehensive explanation of my symptoms!

Marian G avatar

Marian G

Well said and very frank!

Joy Glass avatar

Joy Glass

Thank you for sharing. I am sick of trying to explain MS to others. The best is my brother, who tells me about his 30 year old neighbor with MS is running marathons. I try to explain how everyone with MS has different symptoms. I am in my late 60’s. It’s not comforting, when people say we are all getting older, if you share you are tired, bad balance or ms hug pain. . It’s hard to explain how sometimes I can get out of chair and other times need help or how I walk with a cane or walking stick or how I have times where I am so fatigued I can’t get off the couch. Yes, I am thankful I don’t have severe symptoms…but there are days that I get disgusted. Bathroom issues, keep me home. I used to be a great at multi tasking, but now I need my husband to keep an eye on me… especially when I cook. Used to love to host. The list of changes goes on and on. I see why so many of us start isolating.
I know so many have it far worse. Hopefully with post like yours we can educate others and support each other.

Elizabeth Williams avatar

Elizabeth Williams

Thanks, Beth.
Somehow we have to stay living in our society and cope. Reading your, article testifies to the difficulty of doing this. How much to explain, how much to withhold is a battle in itself.
Beth Williams

Max Gutbrod avatar

Max Gutbrod

Thanks for raising this! My condition seems way better than yours, and I would underline the difficult to myself understand and manage what is going on. My examples are:

- I have given up explaining most of the details to doctors and therapists because they always get them wrong.

- The minutia which by and of themselves are unproblematic, but do repeat themselves in different form quite frequently, can best be exemplified by an example: At a concert, a couple of days ago, I was feeling increasingly unwell. I suspected that different shoes I was wearing were causing unease, that I had eaten something less good, that my back was causing pain until I put my hand on my knee. It immediately began feeling better and the uncaused movements of my feet lesser, so I concluded that my feet were getting cold. Thankfully, the 15th specialist I had asked about issues with cold had explained that MS indeed changed the ability to feel temperature and the issues in circulation of the feet could cause cold. Without really knowing why I had taken my coat into the hall, in the interval took it off to warm my feet and started feeling excellent. I struggled to keep up with the great conversation about the music, but, little twist of the outside world, did not find the second half of the concert as fascinating as the first.
- To find equilibrium in walking, those days it is best if I start very, very slowly. If I go alone I risk being stuck without being able to return, if I go accompanied I have to try to convince myself and the others that slower is better.
Summarizing: It feels like one is much more busy with oneself, and reaching out is a bigger challenge.

Chrissy avatar


You couldn’t have explained it better, I can relate to all the issues you mentioned.
This is such a hard and life robbing disease.

Bill DeVore avatar

Bill DeVore

As is most often said by MSers: ‘You don’t get it, until you get it.”


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