What we refuse to discuss

The MS community is well known for its willingness to talk about their illness. I myself might share more than others might, but that, of course, is a personal choice. Being from a family where I am the first one with MS, I almost constantly feel a need to share, teach and sometimes to explain some differences in opinion on how to live with MS. In that regard, I sometimes have MS things on my mind, but when I go online, I can’t see them discussed in chat rooms or forums.

Take for example brain atrophy. The first time I heard about atrophy was at a MS Patient conference in May. In the nine years of being diagnosed, never had I come across, and never did anyone talk to me about MSers having a faster-shrinking brain. To my very surprise, I therefore learned that in people with MS, brain volume is lost around three to five times faster than in healthy people.

Image brain and central nervous system

Click on image to find out more about brain atrophy

I also learned that research in brain atrophy is a rapidly emerging medical field. Atrophy is an indicator to predict disability and cognitive issues, so the sooner it can be dealt with, the sooner disability as a whole can be treated.

So why do people with MS not seem to discuss this? Is it possibly the idea that what you don’t see, simply gets forgotten, or that others perhaps don’t know about atrophy just like I didn’t know?

Another such thing is talking about your sex life if you have MS. In fact, I should rephrase this to ‘not talking about it.’ People are conservative about this subject in Ireland, and it’s a given that not everyone wants to talk about their intimate love life.

But just because you don’t see or expect people to have such issues, however, doesn’t necessarily mean all is well with them. I gladly break that mold for the sake of perhaps helping someone who wants to see his or her questions answered.

Perhaps people in a urology waiting room might find strength to open up about their sexual problems, after all, MS and urological issues often go hand in hand.

Sexual dysfunction, (in)continence, the fear of perhaps having to wear diapers or a colostomy bag, is a serious enough reason to open up to others. Only, it’s not. It’s a case of “Nah, I’ll deal with it when that time comes.”

One of the reasons people without MS forget about the neurodegenerative illness of their friend or colleague is threefold: MS is an invisible illness, some symptoms are kept private and friends are busy dealing with their own life first.

Sure, it gets tiring having to explain yourself repeatedly, so sometimes people with MS will just keep quiet. On the other hand, being forced to talk about intimate details can be counterproductive.

Image of couple fighting

Click on the image to find out more about MS and sex

Some of the non-talked about issues people with MS have are constipation, bowel and urinary urgency and treatment causing erectile dysfunction. Also, hypo or hyper sexuality, dysfunctional emotions like euphoria, mood swings, uncontrollable urges to weep or laugh, mania etc. The list seems endless, hence the relative urgency to open up these intimate details of people with MS.

Whether it’s shame, the fear of burdening others or being stigmatized, there is always a way to bring the subject of contention to the fore. Rely on the ever-growing MS community. Try to open up to family and friends in baby steps. Show them an article online or in a magazine or take them to hospital appointments.

The main thing to remember is: it shouldn’t stay hidden if you feel a need to discuss the ‘silent’ topics, after all, it isn’t insanity, it’s MS.

Follow-up:

What you might not be aware of

© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

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5 Comments

    • Billie says:

      Thanks Jean, it’s something that really needs to be more open and easy to talk about, after all, we’re all human beings and we all have needs, wishes and fears we want to be able to deal with without feeling stigmatized.

      Liked by 1 person

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