The MS community is well known for its willingness to talk about their illness. I myself might share a little bit 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 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, sexual dysfunction or continence issues. The first time I heard about atrophy was at an MS Patient conference in May. In the nine years since being diagnosed, nobody ever talked about people with MS having a faster-shrinking brain. To my very surprise, therefore, I learned that brain volume is lost around three to five times faster than in healthy people.
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 possible that the idea of what you can’t see, simply gets forgotten, or that others perhaps don’t know about atrophy just like I didn’t know?
Similarly, 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, 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 factor of their friend or colleague is threefold: MS is an invisible illness and some symptoms are simply kept private. Or, people in their environment are too busy living their own lives and forget about the nitty-gritty of what ails you.
Added to this, it gets tiring having to explain yourself repeatedly. I have had to define what facial pain is so many times I just want to tattoo its characteristics on my forehead. It is all too human to avoid referencing to intimate medical problems. On the other hand, being forced to talk about private details can be counterproductive.
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 hypersexuality, emotions like euphoria, mood swings, uncontrollable urges to weep or laugh, mania etc. belong on the list of what we rather avoid talking about.
The list seems endless, hence the relative urgency to unlock the fear of talking about intimate MS symptoms.
Whether it’s shame or feeling 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 online article or take them to doctor appointments.
If you feel a need to discuss ‘silent’ topics, just do. It will be one of those topics that will make you say, “I wished I had done this a little sooner!”
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2014. Unauthorised 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.