It’s real as far as I can see

Coming head-to-head with my old friend denial once again. Whenever I think I’ve got a grasp on my MS, I have another realization a few weeks or months later that lets me know I’m still not dealing with it.

And I suppose that makes sense, as I’ve read that other people with chronic incurable illnesses go through similar stages of denial, bargaining, anger.

I read an interesting statistic the other day that only 30 percent of people with multiple sclerosis are working. That number seems so shockingly low that I’m not even sure it’s accurate and I want to make time to try to verify it. (Update: I verified it and the 30 percent figure seems to be for people with progressive forms of the disease, and I’m already secondary progressive. It can be as low as 15 percent depending on the type and stage of MS. For all people with all forms of MS, about 55 percent are working.)

But at the same time, my transition to full-time work has revealed something quite clearly that I hadn’t been admitting to myself before: I am getting worse.

Multiple sclerosis uses this scale to measure degree of disability called the Expanded Disability Status Scale (or EDSS for short.) It goes from 1-10 with .5 intervals to measure the specific functions in which you may be impaired and to what degree.

Five years ago, my EDSS score was a 1.5.

Today, after the relapse I had last year, I’m between a 3.5 and a 4. What’s particularly scary about that is an EDSS score of 4 is the point at which your specific symptoms are considered permanent. If I’m not there yet, I’m just on the verge of it.

It seems like the two camps of treatment (pharmaceutical disease-modifying drugs or the natural approach combining a very strict low-fat diet plus lots of exercise) seem to encourage denial. Neither is a cure. “Success” with either form of treatment means that your disease doesn’t get any worse, but none of them actually makes you better.

Both sides say that if you just stick with them, you won’t get worse. But you might still get worse anyway – many people do – and then you have to find out why you’re getting worse. If you’re taking the drugs, it must just mean the drug has stopped working for you. But given the irregular nature of the progression of the disease, how can you ever know that it was truly the drug itself that kept you from getting worse for a while? You might not have gotten worse without the drugs, either.

If you’re taking the natural approach and you get worse, it’s always your fault. You weren’t strict enough with your diet. You didn’t manage your stress well enough. You didn’t get enough exercise or the right kind. There’s no real science backing up that these things really help, but there’s always a handful of true believers whose disease has been at bay for a long time, which they attribute to their lifestyle choices.

Both require a lot of faith in what you’ve chosen and I do believe that the mental factor and self-talk are major influences on this disease. But the truth of the matter is that no matter how much faith you have in your chosen treatment, whether or not you get worse and at what rate is still largely a crap shoot.

Sure, you can definitely do things that make you get worse more quickly, like smoking or having a high-stress job. But you can do all the “right” things and still get worse.

I’ve read that a lot of people with MS are or were control freaks, which makes it ironically fitting that the disease itself is defined by your lack of ability to control it.

It’s also a lonely disease, at least for me. The support groups are largely full of people who are continuing to get worse and are therefore understandably scared and negative. But those views are contagious and I need to avoid them. And although the natural health groups are more empowering, there’s still a not-subtle undercurrent of victim-blaming if you’re not getting better.

I don’t actually know what’s going to happen with me. Working is better because I feel more useful and don’t have as much time to sit around inactive and lonely. But although I’m not having trouble waking up early, the realities of full-time work are a lot harder on my mind and body than I expected.

The good news is that I’m determined not to give up, no matter how hard things get.

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