Addressing the “Bad” of MS is obvious and that raises the question, “How can anyone say anything positive about MS?”
Bear with me for a moment. I will get to that later. The “Bad” is almost everything about MS. It sucks! Your life is going along the trajectory you want and understand and then suddenly, everything is upside down for unknown reasons. The cause of the upheaval is not obvious at first as many people are diagnosed later in life with MS, initially being told that “it is stress” or “it is all in your head”. And a lot of it is, in fact, “in your head”, but not the way that message was intended. My history with MS began with deficits and symptoms that were characterized as “of unknown etiology” for years. It took approximately fourteen more years of an accrual of symptoms for me to make my own official diagnosis of MS. You read that right. As a board-certified neurologist with over twenty years’ experience practicing neurology, I did not recognize that I had MS. The painful numbness over my torso was guessed to be from “a drug allergy” despite no new drug exposures to account for said diagnosis. It was the best guess I, and my doctors, had at the time. Once MS was diagnosed, I continued practicing medicine for about two and a half years. I made a deal with myself that when I got to a level of below 95% of my best abilities, I would stop working as a neurologist. I wanted to honor the principle of “do no harm,” as expressed in at least one version of the Hippocratic Oath. The “Bad” of MS progressed over the fourteen years before my diagnosis. A bout with shingles, horizontal double vision (diplopia), followed by vertical diplopia made it obvious that I had MS several years before the definitive diagnosis could be made. Walking difficulties with leg spasticity and memory difficulties with word finding deficits soon joined the list of problems. The “Ugly” of MS was the nasty way it blew up my life plans. At fifty-three, it had robbed me of my profession. The diagnosis made me fearful of what it would do, not just to me, but to my family, loved ones and friends. It gave a new urgency and sense of terror to questions like “How will I help keep the family afloat monetarily and emotionally?”, “Should we have children” and “Can we even consider buying a house and commit to a mortgage (if I could even get one)?” I could not answer these questions. Nor could I provide an answer to the question posed to me by my wife of, “Will this disease progress and how rapidly?” After answering “I don’t know” to all these questions she, in frustration, asked, “How can you not know? You are a neurologist!” I whispered in her ear, “Because nobody knows.” Sounds bleak, doesn’t it? So, how can there be a “Good” in this scenario? Cue your eye rolling as I try to answer. As a card-carrying curmudgeon prone to comment derisively on statements or activities that smack of hyperbole, I understand. And, no, there is nothing that makes a person “thankful” that they have MS. We need to change the narrative just a bit to see the good. The fact is people with MS have MS. Currently, there is no “cure” so wanting to no longer have MS is a hope and a dream only. With that truth, where is there any good? With all the losses and uncertainties, a sense of isolation is common (yes, I have asked others with MS to verify that it is not just me). And, I have found a community in MS. While not everyone experiences MS in the same way, all of us are united by having experienced losses. Support is offered freely. I have benefitted when I needed help. I believe that I, too, have helped others on occasion. Having MS gives many of us a community that cares and wants to help. Our MS-related acquaintances become our friends. As our friend groups expand, support and diversity of experiences (and ideas on how to address needs) follows. Support groups, advocacy initiatives, awareness raising, advice and doing what we can to make one another’s lives better creates a national and international caring community. That is the good.