Masking Symptoms of Multiple Sclerosis

Masking MS Symptoms

Our Outward Appearance Could Mislead Others To Our MS Condition

It’s a Sunday morning and find myself starring into the bathroom mirror trying to apply enough concealer to cover the dark bags under my eyes due to the several weeks of experiencing a sleep disorder. My face is red no doubt due to my blood pressure being elevated from the pain I am experiencing. The long warm shower I took helped loosen up my muscle spasms, but did nothing to help the severe back pain that has plagued me for the past two months. My eyes look tired but maybe if I put eye drops in that will help; but I will add extra make up on my face and around my eyes to help distract others from noticing all the problems that my eyes and face are presenting. Carefully I choose an outfit that is brightly colored and neatly pressed so I look refreshed and cool in this awful heat that has been reigning over us. I must pick out flat sole shoes so if my balance continues to be disruptive that my feet aren’t trying to over compensate with heels on. My hair is so thin, but have little energy to spend working with a curling iron to provide more body but at least it is clean and styled and preserved with a gallon of hairspray. Now a lip color is needed just to add a little more color to my face. There, I think to myself, as I look in the mirror maybe I don’t look as bad as I feel.

As my husband and I pull up to church, he opens my car door and holds his arm out for me to hold on to as we walk up toward church. I put a smile on my face so that others who are arriving the same time hopefully won’t notice how bad I am struggling to walk. I have missed the 4th Sunday in a row due to my Multiple Sclerosis acting ugly but hoping my absence wasn’t noticed that much by many. My heart is telling me that I need to be here to enjoy the wonderful music, great message that will be provided, and being around all my friends that continue to pray for me daily would do me a lot of good; especially getting out of the house for the first time in weeks. I can feel my body is screaming at me and calling several dirty names for putting it through all of this. As we entered the building, several people came over to me to tell me that I had been missed and to see how I was feeling. Rather than “telling the truth”, my response is, “today I am fortunate to be up and walking”, not adding that I needed the continued use of my husband’s arm to stand upright. As I continue to smile, several responses are, you look so good, healthy, and we are so proud that you are doing so much better. At first my thought process is wow I must have done a great job getting ready and mission accomplished but then my second thought shocked me.  I began to worry that the prayers would stop because of my presentation of myself to “MY FRIENDS” was a lie; my response was a lie! Why did I need to misrepresent myself to those I considered to be my friends? One person asked me a question which caught me off guard, “How are you REALLY doing? It was weird because she and I hadn’t really talked much; we traveled in different circles within our church, served in separate missions and church activities, and sat at opposite sides of the church. Our paths really didn’t cross often. I found myself being brutally honest with her of all the people I spoke to that morning. Her reply caught me as much of a surprise as her question; she said, “You never show or demonstrate any problems, in fact you always look happy and so put together.” She went on to say that most people demonstrate pain through their eyes, facial expressions, and body language, and that every time she saw me that I always had a smile on my face and appeared to be doing really good. This is when it hit me; I do cover up and mask the MS to almost everyone except for extremely close family members.

Over the years I have read many responses from other who also suffer with MS about the statements that others have made to them that may seem cruel, inappropriate, or otherwise opposite from what we expect them to say to us. Most individuals who do not understand about this disease do not know what to say. The outward appearances that we present provides them misgivings of what we are truly going through, and unfortunately all I have done is add to this misperception by all the covering up of what little outward appearances that MS does provide. I probably should have had a cane on that Sunday; but instead I used my husband’s arm providing those who looked on the impression that he was being a total gentleman and we had an extremely loving relationship. Don’t misunderstand, we do but again it certainly didn’t demonstrate my difficulty walking or with my balance. A cane, which would have been out of the ordinary for me, would have provided a totally different message. If I hadn’t dressed or applied the type of make-up that I did, maybe my face and eyes would have screamed that I wasn’t well.

The point here is how much are we to blame for some of the misgivings that other people perceive about Multiple Sclerosis? Who really sees us day in and day out other than our immediate family or extremely close friends? There is a friend of mine, in which we had gotten closer to over the past several months, told me one day that she had never realized just how much difference even a day could make with how I feel. She had witnessed how even within a 24 hour period that my I could be fine part of the day then not well at all the next half. It was difficult for her to understand just how MS could present itself in so many different ways. All I could do was laugh because I told her it was as difficult for me to explain as well. Unless people see the external signs of how MS affects us, there is really nothing else for them to visibly witness what is going on inside our body, especially if you are not verbally or physically showing any outward signs of pain, muscle spasms, cognitive or speech issues, bladder or bowel dysfunction, etc. Unless Multiple Sclerosis becomes a household name or is understood by all there will always be a misunderstanding of its symptoms and damage it can do to all of us who suffer from it.

If you find yourself upset by a comment or lack of understanding of what you are going through living with MS, give some thought of how you may present yourself or covering it up. Then ask that individual why their perception is that way, you may be surprised by their answer like I was.

MS Blogger and Multiple Sclerosis Activist shares her journey living with MS, tips for others living MS and her husband, Steve, offers his insight as a caregiver for MS.