In my journey to receive diagnosis, I did a lot of researching. I do not use this word lightly, as I did much more than webMD my symptoms. What’s ‘wrong’ with me doesn’t show up on standard lab tests. I physically appear well and youthful. I don’t even appear to be in much discomfort… and this is part of the problem. I live, day to day, with pain around an 8. “Pain” as it turns out, is felt by the body even if you are unable to neurologically comprehend what’s going on.
Specifically small fiber neuropathy. Studies have shown that 50% of people diagnosed with Fibromyalgia were found to have underlying unmyelinated nerve fibers. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4348533/) As someone who experiences widespread pain, tingling and numbness, you better believe I have looked into this. At times I’ve wondered if maybe I suffered a stroke without knowing it. Professionals have now diagnosed me with Ehlers-Danlos Syndrome, and suddenly a door has opened to a boat load of validation. You say you experience X? It’s truly LMNO! You experience G? It’s actually EF&G. And it just keeps coming. No, I’m not a hypochondriac, and no my doctors aren’t nincompoops who don’t know what they’re doing. I’m a zebra and there’s a lot going on with me.
Just yesterday I sat across from a fellow EDS warrior who has vEDS (rare and life threatening) and she told me about organ prolapse. As a woman with EDS, who has given birth to three children, this is a condition I now know I need to speak to my doctor about. I wouldn’t have thought about it because everyone I have ever talked to about my symptoms said it was “normal.” While speaking with her, it was made apparent that I have been compensating for serious conditions like this for most of my life. That’s what we do. Those of us with serious conditions like EDS (and many more, I won’t risk leaving anyone out) are excellent adaptors. We live with pain as a baseline, and we hardly even acknowledge it unless we find that we cannot adapt. Adaption is supposed to be a fundamental rule for evolution, “survival of the fittest!” But for us, adaption leads to further injury and can be self harming. Essentially our brains have done the evolving, where our mutated genes have failed us.
We choose to bring light to these conditions, because this isn’t sustainable. As long as we do not have a cure, it will require more resources to care for our bodies than we can muster up on our own.
Normally I would say that we need help from those of you who love someone with EDS, but today I will say something else. Help raise awareness for the incredibly brilliant minds that are capable of learning to adapt constantly… these minds’ contributions are often missing from society. If we are capable of adapting and compensating so quietly, what couldn’t we accomplish if we were unhindered? Just think about that for a minute: such a large percentage of the population lives with a chronic illness… that’s a lot of people with brain fog and exhaustion. A lot of high adaptive and strong willed people with a lot on their plates; people with motivation, but few resources, to revolutionize the world.
Do it for us.
If you are a warrior for the chronic illness community, please share your favorite non profit in the comments. Let your world know how they can help you and other exhausted world changers out there.