Sunday, February 28, 2016



Why “Just Do Yoga” Won’t Work For Me

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    Being chronically ill brings with it the inevitable burden of “advice” givers. Those who mean well but don’t truly understand the nature of being chronically ill. The ones who say “Aunt Cecelia went gluten free and she’s fine now” or “Gary down the street started yoga and he can walk again”. Individuals who shower you with the success stories of acquaintances who changed one habit and are now, miraculously, cured. And you could be too if you’d just try!”
    “If you’d just try.” In their minds, the fact that I am sick means I am not trying hard enough to get better. What they are overlooking is the fact that I will never get better. My illness precludes it. It is incurable. It is degenerative. And it will progressively get worse. So nothing I do will make it better. And that’s OK. I can accept it. It’s just really hard when the people around you don’t get it and insist you’re not doing enough. That you’re not doing sick right. So let me point out a few things…
    First: My disease is autoimmune. That means my immune system randomly decides to attack ME. It’s not something I can control nor is it something I can predict. Even if I sit quietly all day long, my immune system could decide to mount an attack the next day and I will be in pain. So telling me to get more rest or not to do things isn’t helpful. Yes, I need more rest but that’s because being in pain all the time is tiring. Not because it will help me get better.
    Next: Because my disease is autoimmune, there is no diet that will cure it. Yes, there are people out there for whom going gluten free has brought about a reversal of symptoms. But there is also a condition out there in which the body is allergic to gluten. In that case, not eating gluten will basically cure you. It’s not a true cure as the disease is always there but that person will have no symptoms as long as they stay away from gluten. But in my case, the best I can hope for is to reduce inflammation through diet. And that doesn’t always help. If my disease is going to flare up, it's going to flare up and I will swell. And hurt.
    And finally: Because my disease is based on inflammation and exercise causes the muscles to swell, exercise can actually trigger flare ups. Now that’s not to say staying active isn’t recommended and even helpful, but it will not make the disease go away. Making my body as strong and healthy as possible can slow the progression of my disease because it will take longer to wear away at my muscles and ligaments. But, not having flare ups is the main way to keep this disease where it is, so pushing myself too hard can be just as bad for me as doing nothing. It’s about knowing your personal limitations and not exceeding them. That way, the disease stays right where it is for as long as possible instead of eating you alive.
    Let me throw in one last note about yoga. Do you realize the amount of strength it takes even as a beginner to start yoga? Yeah! Don’t suggest that as a way for us to heal please. Our bodies are far from normal and that includes strength. Yes, there are those of us that can do it, but there are more of us whose muscles are under attack and for whom it would do more harm than good. you don’t want that for us and we certainly don’t want MORE pain!
    So just remember, we are the experts in our particular disease. (In my case, most of my friends can’t even spell what I have!) If you are one of the ones out there who knows someone with a chronic illness, pay attention to the word chronic. It really does mean chronic. As in long lasting. And if any of these things could cure it, we’d know by now. Believe me-we’d know!

Well, at least I’d be eating that snail burger if it would cure me...