MS Maze

I am the voice of doom. At least that’s what I’ve been told. A recent commenter said that I rob people of hope, have already lost my battle with multiple sclerosis because of my attitude, and I am a victim of doctors and big pharma.

Apparently, I’m the voice of doom because I caution my fellow MSers to be wary of scams touting “cures” for MS. If I had a dollar for every time I’ve been offered the cure for MS, I could retire. Unfortunately, these scams are intended to make a buck off our hope. I don’t mean to rob anyone of hope. In fact, I’m filled with hope at recent medical breakthroughs. I stand by my advice… be wary of cures that land in your email inbox and always perform due diligence.

I was also taken to task for not acknowledging remission, but he obviously doesn’t see the distinction between “remission” and “cure.” Then there’s the theory that I’ve lost my battle with MS because I believe that step one is to accept the diagnosis. I simply can’t follow that train of logic. I can’t exactly wage war against something I refuse to acknowledge. If I didn’t believe I have MS, I’d still be trying to figure out what’s wrong with me, not learning how to treat it.

Maybe he meant “prognosis” rather than “diagnosis.” Even so, I haven’t accepted any prognosis and, in fact, haven’t been given one. It’s awfully hard to give a prognosis to an MS patient, and most doctors won’t do it.

Most importantly, I haven’t lost my battle with MS — not by a long stretch. I’ve accepted that I have MS and I’ve moved on from there. I maintain a healthy lifestyle. I’m living a good life; I’m productive and happy. Life is good. Very good.

I’ve had my troubles with doctors and I admit to a love-hate relationship with pharma, but I’d hardly call myself a victim. Yes, I choose to take one of the disease-modifying drugs for MS, but no one is making me do it. I’ve educated myself as much as possible and made the decision that I believe is best. There is no sinister plot at work to force me into compliance.

But here’s the real issue. It is something I’ve run into time and time again: harsh judgement of other MS patients and how they have decided to deal with it.

How and why we each come to our decisions is complicated and personal. It is not my place to tell you what you should do, nor is it your place to tell me. Our symptoms, other medical conditions, family, medical advice, and finances are just a few of the issues we each have to take into consideration.

My choice is to combine a healthy lifestyle with a healthy mindset, along with a dose of modern medicine. I am fortunate in that I do not suffer from depression, a common symptom of MS, so I find it rather easy to keep a positive frame of mind most of the time. That’s not to say that I never have a negative day. But the battle is most assuredly not lost.

I love when people with MS reach out to each other with news and information and mutual support. Sharing what we’ve learned is the single best thing we can do for each other. But before we hit that comment button to slam someone else, let’s stop give it some thought. If you read it fast, you might want to read it again to make sure you understand the context in which something was said. If you disagree with the writer, it’s not difficult to debate without attacking — and is a much more productive way to get a point across.

If we, who have MS, can’t support one another, how can we expect others to?

Note: This article has been cross-posted on BlogHer.com, where it was also mentioned in Catherine Morgan’s, blog post, “Chronic Illness: Claims Of Cures Are Often Scams.”