Invisible MS: Now You See It...Now You Don't
How true. It is very difficult to face the challenges of MS every day of your life when people react to you as if there's absolutely nothing wrong. In one sense, I do not want MS to define and dictate my life. I don't know of anyone who wants to live her life as the poster child of chronic disease. On the other hand, I need for others who interact with me to understand that I have very real limitations and challenges. It is an emotional and psychological balancing act for both the MS sufferer, and the friends and family who are trying to be supportive.
In the booklet, "But You Look So Good!", Gina Gunkel notes another element of this issue:
"The other interesting part about invisible MS, especially with people that are newly diagnosed, is that psychologically a lot of people stay in denial longer because they don't have to confront it with other people. They don't have to confront it, trying to get out of the car, going inside the mall, because people don't know. I think psychologically, people with invisible MS take a lot longer time to come to terms with their illness and their diagnosis."
I would add that it might also take more time for friends and family to accept an MS diagnosis of a loved one when they can't detect any outward symptoms. The overriding question for me is: how do I manage the challenges of very real MS symptoms when they are apparent only to me? Should I just ignore the observations of well-meaning friends and family when they insist that since I'm not in a wheelchair today, I can probably do X, Y, and Z if I would only try harder?
In the Healthology.com webcast, "What's Happening to Me? Invisible MS," Dr. Frederick Munschauer provides a possible answer:
"I think that when we deal with these symptoms, it's very important to have somebody with MS when they're not feeling well express it, because they need to get the people who live with them and work with them aware that they're not having a very good day. It's also very important that they tell their doctor, because there's very good therapy to treat a lot of these symptoms."
That makes sense to me. It is imperative to communicate effectively in all of our interactions--both personal and clinical. Since I can't control the actions of others, I've decided
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