The Real Face of MS

By Laura September 3, 2011

Do you grow weary of hearing the inspirational tales of people who have MS but still conquer the world? Do you have trouble identifying with the athlete who just ran, swam or biked across the world in the face of MS or the person who climbs into the ring with a raging bull and emerges with the championship belt? The list of motivational speakers includes a wide variety of talents and skills and they mean well, but it can be difficult, if not impossible to relate to their message.

It’s a mystery why this disease affects all of us differently and I don’t begrudge those people who appear to have benign Multiple Sclerosis – that mild disease that may not even need to be treated. Kudos to them being able to continue living life to its fullest, setting lofty goals and working hard to achieve them and I certainly don’t want to take away from their successes, but I have trouble relating to these super-patients. Their normal of living with Multiple Sclerosis doesn’t compare to the normal of the numerous people I know who have this same disease.

The best human interest stories and inspirational tales for me don’t come from the globe-trotting, super achieving people with MS. The real people living day in and day out with the struggles make the most inspirational witnesses to the human condition of living with Multiple Sclerosis.

Let me hear the experiences of the primary progressive MS patient who regularly lobbies on Capitol Hill in Washington, DC, to keep awareness of our needs in the limelight for legislators. Now this is someone I should wish to emulate.

How about the single mom whose partner decided to leave rather than stay in the trenches with Multiple Sclerosis? Recently I heard that 70% of people living with MS end up divorced; how do those people who are left alone, often with children to raise, manage? These people only have themselves to rely on for their daily needs. There has to be a tale or two about their highs and lows that would inspire me to not give in to this monstrous disease and its unfortunate side effects.

Or maybe I can learn important lessons from the person forced onto disability from their dream profession, because MS doesn’t discriminate and strikes people from all walks of life. What does it take to maneuver the maze of assistance programs when you lose all your assets and your identity to this disease?

There are as many stories as there are people living with MS; they may not all have happy endings, but there are lessons to be learned from all. Life with MS is not a happy fairy tale, but more like one of those tales from the Brothers Grimm, where life is often cruel. Give me the real life stories of emerging from the dark side of MS with new direction and a sense of purpose.