Illness Update and Ehlers-Danlos Syndrome: January 2018

Hello, Blog Babes. I’ve been out of commission for a while. Allow me to explain. There comes a time in chronic illness where you have to feel some control and stability over suffering. I came up with defense mechanisms. I created a wall between myself and the world because I didn’t want to be constantly faced with the dreams and desires that were no longer accessible. When a research-based system didn’t have answers for me, it felt like I was wrong. There was so much hubris in place that prideful doctors made me feel like I was mentally unstable, that I was giving them inconsistent or unreliable information, and that was why they couldn’t help me. Having been under personal scrutiny for about a year, of course I withdrew from the “help” of Western medicine.

Woman Suffering From Depression Sitting On Bed In Pajamas

I took a break, spent some time with family. I went off the feeding tube that kept landing me in the ER, got a puppy. I Moved to Washington, and moved back to Utah. At this point, my symptoms weren’t ideal, but they were stable. I was able to walk without fainting most days. I was able to drive without too much dizziness. I was able to eat, not enough, but enough that I wasn’t risking heart failure. I just wanted to feel something resembling normalcy instead of being on a hospital bed with an IV in my arm all the time.

Eventually, I decided that wasn’t enough. I’m a fighter. I’d rather go down swinging than accept that “this is it” for me. Sometimes, all that kept me going was the thought that I might save someone else from future suffering- that I might be anecdotal research to contribute to future cases of neurological and digestive disorders that are currently under researched. It would be selfish of me to give up because not only would I be giving up on sufferers still searching for cures, I would be giving in to a self-serving system that is ignoring the illnesses inhibiting the lives of millions of capable and young women. This might seem a little condescending, but it’s actually really bleak. Only when I could no longer find any reward to existing in my own skin did I look outside for survival.

I didn’t leave out the term “men,” accidentally. There’s a reason that our medical system refuses to acknowledge and treat disorders like mine. At a rate of 4:1, chronic fatigue is suffered mostly by women. My neurological diagnosis, POTS, which is responsible for my abnormal blood pressure, heart rate, and constant dizziness, is suffered by a female majority. My most prominent GI symptoms are caused by SMA syndrome, which is also seen much more frequently in women. In fact, there are only about 400 cases of SMAS in medically recorded history, probably because it is so frequently confused with anorexia nervosa.
As you can tell, my chronic illness journey has become pretty political. Don’t like it? How nice that you’re able-bodied, and that gender oppression doesn’t smack you in the face every morning. Now, go watch your Fox News. Anyway, this pattern of medically unexplained illness suffered mostly by women led me to some new findings. Interestingly, around the same time, a new specialist began evaluating me for another largely-female condition: Ehlers-Danlos syndrome


Ehlers-Danlos Syndrome (EDS) is “a heterogeneous group of congenital connective tissue disorders thought to be caused by mutations in genes coding for collagen proteins source. The connective tissue a person with EDS is built with is not structured the way it should be. With a badly-constructed or processed connective tissue, some or all of the tissue in the EDS-affected body can be pulled beyond normal limits which causes damage. Connective tissue can be found almost anywhere, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on. Source

Any doctor could have noticed signs of Ehlers-Danlos in my medical work-ups years ago. Lots of qualities of the illness are clearly visible. For example, flexibility, softness and elasticity of skin, genetically inconsistent thinness. But, since the disorder is commonly unrecognized by Western medicine, it never occured to any of the specialists I’ve seen.

Part of the reason I was only partially diagnosed for so long is that doctors were looking for a gastrointestinal illness. While my condition actually affects all connective tissue, it’s just more obviously affecting my digestive tract because my weight loss is so severe. Now, the trend of looking solely at my GI tract for solutions to my symptoms was an arrogant, uneducated mistake on the part of many doctors. I had told doctors that I had pain and tingling everywhere, not just my GI tract. I had explained that I had neurological symptoms like dizziness and sudden loss of control in my extremities. I even went on a neurological medication, and explained that when I lowered the dose, my digestive problems got worse, suggesting that the digestive problems were neurologically mediated. Soon after, I was given the neurological diagnosis, POTS, but my doctors went back and forth about how aggressively to treat, since the POTS was a “secondary diagnosis.”


After all of this frustration and continuous skepticism by critical practitioners, I was just as confused after months worth of testing and a feeding tube than I had been before. Now, this is often when people get really into naturopathic medicine and start chanting around fires in attempts to heal themselves. I’m not quite there yet. I’m all for Eastern healing, too, but I don’t think Western medicine has offered me all it has to offer. I believe in science. And I believe in the intelligence and good intentions of individual doctors working to improve a dysfunctional system. Furthermore, I believe in myself. I believe in four years of my own research and a seasoned bullshit-ometer finely tuned by four years of appointments with assholes telling me I have a mental problem or an eating disorder.

Believing in myself and seeking professional help aren’t mutually exclusive. I don’t believe that this is the quality of life I will always have, and I don’t believe in this treatment for all chronically ill women (or men). There is too much stigma in our medical system– there is a hierarchy that separates patients from research because of a prideful fraction of stubborn practitioners who reject up-and-coming experiments and more adaptive therapies. We are maintaining cyclic symptom-management and over prescription of pain medication and antidepressants to manage chronic illness, instead of digging for deeper knowledge and better understanding of the biological causes and solutions. I am living proof of an unfair and unbalanced system. I am also proof of the determination and stamina of Chronic illness warriors who will be part of the solution.

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