Living with an “Invisible Illness” can have its benefits and pitfalls depending on how you look at it. So often I hear the following:
*At least you aren’t in the hospital. * Good thing it’s not cancer! * Well you look so healthy so I’m sure you’ll get better soon. * Well it can’t be that bad if you look this good. * You must be getting better, you look fine!
Well thanks to all those people. Sometimes I want to pull my hair out. While most responses to an “unknown” condition like this are out of fear or lack of education, I know they are just trying to be nice. However, those statements DO NOT help! Some days I wish I had cancer or some other recognizable illness. No disrespect is meant for those people that have fought that battle. I have had some friends & family members go through it so I know how hard it can be. YET, they know unequivocally what’s wrong with them! They have a plan of attack and a probably timeline for treatment and hopeful recovery. Treatment options have also been established. A cure? No. Effective treatments, yes, if you’re lucky enough to find one that works for you.
Living with CFIDS is a daily emotional struggle with not knowing what my treatment path is, when I’ll feel better (if ever) and the constant explaining of symptoms to doctor after doctor to try and tweak medications to find something that makes a difference. Knowing this is a constant battle that I will face on and off through life is exhausting just thinking about it. And on top of all that, CFIDS patients find themselves having to legitimize their illness and pain they go through every day, if they are one of the few that speak about their condition at all.
This past week I have heard people close to me say that I have Celiac disease, “something like the arthritis disease”, migraines, thyroid imbalance, slow metabolism and… my personal favorite… “she sleeps a lot. I can’t remember what makes her tired.”
The truth is no one seems to have a definition for what CFIDS is. In fact, depending on where you are in the world, you may hear it called things like CFS, M.E., and Fibro. I have discovered my own way of describing it to people, but making them actually LISTEN is a whole different task. As I find myself explaining the disease and symptoms, I get inundated with recommendations of doctors or specialists that are good at this or specialize in that; usually none of which have anything to do with my symptoms. Just because someone is a naturopathic physician does not mean they know all about CFIDS.
What I’ve Learned:
Find your own definition. Being comfortable with your own description of your disease can be the difference in convincing someone versus having them understand and accept.
Be prepared for questions. I’d like to say there are no stupid questions but I have discovered that may not be the case.
Be patient! Not everyone will know what key CFIDS terms mean. Try explaining what Autoimmune means, what exactly your symptoms are and how they relate to the disease itself.
Be confident in what YOU know and feel. Only you experience this disease and therefore only you know what your body is doing and telling you. Your doctor, friends, family, or event your caretaker cannot identify things happening as acutely as you can.
Remember: It’s not their fault! The traditional medical education trains not only physicians but the general population to believe in and support only the “proven” diseases, treatments, medications, etc. The development of numerous chronic diseases like CFIDS has forced some of that population to shift their knowledge base and start trying alternative methods of treatment and go out of the box for diagnosis that may not be “socially accepted.” That is not your friend’s fault that is questioning why you can’t get better. Not your boyfriend’s/husband’s fault for not defending you because he doesn’t know what to say. Not your family’s fault for not approving of alternative medical treatment. They Just Don’t Know! And maybe you can be the one to open their eyes & teach them!
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