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Woman with MS talking to friends and family

“Do you see me? Do you hear me? Does what I say mean anything to you?”

-Oprah Winfrey

Living with Multiple Sclerosis (MS) has taught me the power of validation. I understand why MS is referred to as an invisible illness. I have often heard, “But you look normal, you look fine”. From the outside, I may be. I don’t announce when I have spasticity or tingling. I don’t go to work complaining about the pain in my arm or the confusion I have that day. My symptoms are invisible… but I am not.

I remember going to a dinner party, and a friend had his finger bandaged after receiving stitches from cutting his finger. As it was visual, everyone was concerned. They wanted to know what happened to him and if he was okay.

Another person at the dinner party had a hand that seized up when picking up a plate. Again, it was visual, so the guests were concerned and asked how he was feeling.

A third person jumped on the bandwagon of pain stories and, as she squinted, said that she had a terrible headache. That comment opened a Pandora’s box of people talking about the degrees of the headaches they experience.

I carefully listened and observed their conversations. There were good explanations for their pain.  People could see what was wrong, so they were interested in speaking about it. Everyone at the dinner knew I had MS, and yet no one asked how I was feeling. Little did they know that my toes were tingling, and I had extreme lethargy. The day before, I experienced optic neuritis and numb fingers. If there were a contest on who felt the worst at the table, I would probably win. Instead, I felt somewhat invisible because my MS symptoms were invisible.

I have come a long way since my diagnosis. Even though my symptoms and daily struggles cannot be seen by others, I am okay with people not asking me now. I understand that people may simply forget because they can’t see my symptoms. Or, they may feel uncomfortable asking because they may not know what to say or how I would react. I won’t get angry if people don’t ask about my MS. It took me several years before I even went public with my diagnosis, so I should not have an expectation for others to accept it right away either. As people, we all want to be seen and heard. This is enough validation for me. My MS may be invisible, but I am not.

I encourage you to validate the people around you. Tell your boss, spouse, children…I see you. I hear you. What you say matters. You matter.

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