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The Health Sayings I'm Leaving Behind in the New Year

In the old year, 2017, I want personally to leave these particular sayings behind regarding chronic illness:

“Everything will be fine.”

“Just let some time pass.”

“Once you recover from surgery everything will get better.”

I’m leaning on four diagnoses so far, and there could be countless others that I just don’t know about yet. But thus far, Ehlers-Danlos syndrome (EDS), endometriosis, postural orthostatic tachycardia syndrome (POTS), and an immune deficiency…I’ll know more about the latter once I’m done testing this January.

I understand that people mean well. I don’t believe they mean anything else by saying, “You’re on the mend,” or something like, “It will only get better,” than to have a positive nature behind what they’re saying.

But it isn’t a “maybe it will get better” game, or a “maybe you’ll have to wait and see.” There’s no cure for anything I have listed above. So maybe it will get somewhat manageable, but not normal.

People aren’t aware that an endometriosis diagnosis can turn into more than just a one-time laparoscopy. Eleven percent of women with an endometriosis diagnosis also have adenomyosis. My doctor believes I am in the 11 percent based on my symptoms and history.

Constant appointments for EDS regarding meds and joints. Constant endo and possibly adeno symptoms on the daily. Constant symptoms of POTS and not being able to stand up for normal periods of time, which are also daily. And my immune system crapping out all the time making me feel like I’m stuck in a constant cold.

But somehow I’ll wake up tomorrow and it will all be gone? I’m not trying to be pessimistic, I think I’m trying not to lie to myself so that when tomorrow comes, I’m not disappointed when I find out that I’m still sick.

Maybe the most positive thing you can say to someone with a chronic illness is nothing at all. Maybe the fact that you’re there, walking with them through a fire you yourself can run out of at any time, and choosing to stay anyways because you love that person means more than words could ever describe.

If I could go back five years ago and tell my 18-year-old self something positive, it would be completely different from society’s standards of positive, “It’s going to get better, then it’s going to get worse again. Then better for awhile, before going back to worse yet again. But it will get better once again…and so the cycle continues.”

The last five years of my life have gone from better to worse, back to better, before plummeting into worse again. I believe that the saying “it will get better” is only a half truth. The other half is difficult and painful, but it’s real. The other half can’t be denied for the sake of a positive outlook. If I told my past self that everything would be fine, I would be lying.

The full truth of my past, present, and future are whole, cut in halfs representing the better times and the worst for them. The full truth doesn’t come in halves.

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