LIFE WITH MULTIPLE SCLEROSIS

What is a typical case of multiple sclerosis like? The newly diagnosed usually ask what they should expect from a life with MS; but typical, when it comes to MS, is hard to define.

One thing is clear — life with multiple sclerosis is anything but predictable. MS doesn’t come with a road map, a GPS system, or a set of directions. There is no forgone conclusion — and despite the uncertainty, that is good news.

Plenty of people will tell you horror stories of life with MS, or of folks with MS who climb mountains and run marathons. There is truth in all of it, but none of it necessarily will reflect your experiences or point to your own future.

Are you like Lori Schneider of Bayfield, Wisconsin, who earlier this year became the first person with MS to climb Mount Everest?

Are you like Montel Williams, who was devastated by the diagnosis, suffered through depression, and now raises money for MS research, and advocates for people with MS?

Are you like the United Kingdom’s Debbie Purdy, who fought for the right to choose assisted suicide without fear of prosecution, so that she can control her own end-of-life issues?

Are you using a wheelchair… or living in a nursing home… or struggling with day-to-day living… or… or… or…

Trying to pin down the typical person with MS is like trying to pin down, well, the typical person with MS. We are as varied in our physical condition and our outlook on life as the rest of the human population.

I can’t climb Mount Everest or run a marathon, but I was never the outdoor athletic type, so I’m not about to bemoan my fate in that department. If I had been, my perspective would most certainly be different.

Some people with MS have amazingly positive attitudes; many suffer from deep depression. Some have obvious disabilities; others have a multitude of invisible symptoms and, yes, there are people with only minor symptoms that barely register on their radar screen. Many have additional health problems not associated with MS — we are not immune to other illnesses or symptoms of aging. Some have strong family support while others languish.

Most people with MS manage to remain employed; others are disabled and cannot work. Some have the security of good health insurance coverage; others struggle with the financial burdens associated with a chronic illness, suffering the consequences of that added stress.

It is important to meet and communicate with other people who have MS. The mutual support and kinship is priceless. But it is equally important that we not compare ourselves and the course of our condition, that we not harshly judge others for their choices or what we might view as their shortcomings.

Life is more complicated than that. We all received our diagnosis under different circumstances — our general health, age, financial status, family life, and general outlook were all uniquely ours. Add to that the many variations of relapsing/remitting and progressive forms of MS, and it’s easy to see why answering the “what can I expect of a life with MS?” question is so difficult.

A typical life with MS? Definitely challenging, rife with possibilities, and anything but predictable.