You've heard about them before. The people who have multiple sclerosis, but “keep on going.” They run marathons, climb mountains, and skydive, all while maintaining successful careers and happy families. They may or may not take the handful of multiple sclerosis treatments available. Some have special diets, some take herbal remedies, some meditate. So, why is MS holding YOU back? Is it all in your head? Are you just lazy?
It is a legitimate question. If I did not have MS, and if I did not have a particularly troublesome list of symptoms, I might ask those questions of you. I've seen celebrities and spokespeople, lots of them, who despite MS appear healthy and energetic. They seem to have barely a complaint and all indications are that people with MS will live a near-normal lifespan. It doesn't seem to be such a bad thing.
Of course, those of us who have more than a “mild case of MS,” if there is such a thing, know better than that, don't we? We know that:
- Multiple sclerosis is a serious medical condition, even if our symptoms are not obvious.
- MS is a lifelong condition and there is no cure.
- Symptoms include loss of vision, lack of coordination, muscle weakness, vertigo, spasticity, tremors, speech difficulties, problems with swallowing, hearing loss, trouble with concentration and memory, bladder and urinary tract disturbances, pain... and more.
- Fatigue with MS is beyond lacking a good night's sleep. It is a bone-weary, mind-numbing, all-over body fatigue which renders its victims unable to function.
- The relapsing/remitting nature of MS takes an emotional toll; depression is a common symptom of MS, though MS itself is NOT a psychological disorder.
- Symptoms can push us out of the workforce.
- The medications currently available to treat MS are exorbitantly priced, forcing patients to forgo the very treatment which could stave off further -- or permanent -- disability. There are no generics.
- Without group health insurance, individual coverage with a diagnosis of MS -- if offered at all -- can be priced out of reach of many.
- The financial ramifications of a diagnosis of MS are devastating to the entire family.Three cheers for all the lucky folks with MS who don't experience much on that list. Even more so to the people who have troublesome symptoms yet do everything within their power to fight the MonSter, physically and emotionally, alternately succeeding and failing. I think most of us fall in to the latter category.
We've got to stop comparing ourselves to the best case scenario and wondering what we're doing wrong. We've got to remember that each case of MS is different. My MS is not like yours, though we may have a lot in common.
I write this because even though I did not include it on the above list, one of the most common symptoms of MS appears to be guilt. I'm not guilty and you're not either. We're just doing the best we can with what we've got. Guilt? Forget about it -- there are enough items on the list already!