Why I Feel Like an Island With MS

I consider myself to have “textbook” multiple sclerosis (MS), by which I mean that the MS symptoms I have are documented in most of the medical books I’ve seen. Other people I meet with the same condition don’t seem as clear-cut.

What does this mean? It means I feel like I am floating out there on an island, all by myself!

Maybe I’m overthinking things, but I’ve started to feel more justified about having MS, because most of my symptoms are documented and not obscure. When I think about other people with MS, I feel I am focusing more on what symptoms they don’t have versus what they do. Instead, I should be learning about other symptoms that some people with MS do have, and stop thinking of them as foreign because I don’t have the same symptoms happening to me.

Sometimes I Feel More Alone

An example of what I mean by “foreign” symptoms is one that my friend Margaret has. Margaret is happily married with multiple generations of her family, including kids and grandkids, living under one roof. Before her MS diagnosis she had a nice job working at a baseball resort known as Dreams Park in Cooperstown, New York. Driving home from work one day, she couldn’t tell her left foot from her right. Her husband had to come and rescue her.

She has bladder issues, an MS symptom I can relate to. But the foot thing? Not at all.

I feel like I am on my own island when other people have symptoms I have never heard of.

Sometimes I Feel Less Alone

My other friend and support group member, Pam, also has an array of symptoms, including ones that I have definitely heard of and two that I identify with: nerve fiber fatigue and oscillopsia. The latter is an eye condition in which one’s world is constantly moving as one moves. It’s sort of like having a movie camera on one’s shoulder while running. Pam also has trigeminal neuralgia, something I have thankfully never had.

Pam makes me feel less alone, because with her, I do less questioning of why other people have symptoms I cannot identify with. Even with secondary-progressive MS, Pam still has her sense of balance and the hand-eye coordination necessary to be able to ambulate while carrying a cup full of tea.

I walked until I literally could not. My legs were stiff and beyond being asked to do what I was asking. I could speculate all day as to why Pam still walks and I don’t.

It is all right to feel isolated, all alone on an island, because eventually we do share symptoms, maybe not the same symptoms, but similar.

When Other Medical Conditions Complicate MS

Two other members from my support group agreed to come and visit me at home. I really wanted to show them my handicapped-accessible space. These are two men, both with progressive MS but also with underlying complications.

I am finding that not only do some people with MS not share my symptoms, but they are also experiencing totally different medical problems.

My friend Phil has prostate cancer and Crohn’s disease, while Greg has breathing issues due to two bouts of COVID-19. Why are they not textbook MS like me? Phil and I do share diplopia (double vision) but not heat intolerance symptoms. He is an artist and walks miles with his sketch pad in Florida. He does have tremor, but not the way I do. I have classic intention tremors, while his tremors could be medication-induced, as he has complained of depression. He shuffles when he walks but swears he has a bad hip. He shows an interest in my lability symptoms without truly realizing the cause.

In both men, I feel as though things other than MS have become primary health issues. To add to the confusion, Greg has started using a wheelchair because he gets breathless and tired. How much of this is because of his MS and not because of COVID is anyone’s guess.

All this is frustrating to me. It’s not that everyone with MS needs to come with symptoms that match the condition perfectly.

Then why am I so frustrated?

Why Does Being Unique Frustrate Me?

There is a saying in the MS world that no two people have the same symptoms. This says it all. Of course, no two individuals are alike. The brain is our universe, and anyone can sustain an immune attack anywhere, causing symptoms to differ among people.

I’m pretty sure that the resentment I feel stems from working hard to collaborate and negotiate with an evil entity that has taken so much away from me. I have worked so hard to develop ways to do things. And now I am still grieving, looking for recognition and comfort by finding others who have the same struggles.

But MS is diverse, and people struggle in ways that are not exactly the same.