How Often Should You Google Your Rare Disease?

It had never even crossed my mind that there was a connection between my bruised skin, clicking jaw, Sally Hansen’s strengthening nail polish, the blue skin on my hands in the winter, the time I fainted in the middle of the street when I was sixteen, and the two times my sister’s arm popped out her shoulder socket. I brought the fainting episode up at my next physical, but I didn’t see it as a part of anything larger. The doctor prescribed me Gatorade and salt tablets. The fainting, or near-fainting episodes returned, but so irregularly, that I sometimes forgot they happened at all.

I’ve read a lot of stories about patients and families who knew that something was wrong, who spent years searching for a rare diagnosis and struggling through a medical system that doubted their symptoms. I came across Ehlers-Danlos syndrome (EDS) the opposite way. My sister’s doctor had noticed something odd at an annual physical, and asked if she was double jointed. She touched the backs of her elbows together and demonstrated how she would escape from a straight jacket if she had to, which, by the way, she thinks would be pretty easy. Her doctor referred her to a specialist, and once she was diagnosed with EDS, the rest of the bendy-limbed members of our family followed suit.
EDS is a rare genetic condition, which affects connective tissue production. The classic image of an EDS patient is a person with excessively stretchy skin and loose joints moving in all sorts of directions. Every organ in the body is affected by connective tissue though, so it can manifest essentially anywhere. It can cause vascular and digestive issues. If a patient has severe vascular symptoms, it can be very dangerous. There are several different types, but many patients have overlapping symptoms. It also has a high co-morbidity rate with several other conditions, including POTS. There is no cure. To read more, click here.

EDS can be a seriously debilitating disease, although my family and I are fortunate enough to be on the mild end of it. As far as classic symptoms go, I can retract my scapula extremely far, and technically have joint hypermobility. Still, it’s mostly the kind of joint hypermobility that looks like this: I bend my fingers back, and then everyone else in the room has to bend theirs as well to see how far a finger would normally bend, before agreeing that mine go about 10-15 degrees further.

It was, like any unexpected diagnosis, initially frightening. Eventually, my sister pointed out that nothing had changed. EDS can cause digestive issues, but I already knew about my digestive problems, and had received treatment since I was about 8. We were living in the bodies we always had, manifesting the symptoms we never saw as symptoms. Why should they suddenly scare us now? Why was I worried about the ethics of passing my condition on to my potential children, if I, myself, was happy to be alive, in spite of EDS? If I decide to carry a pregnancy later on, it will be something I have to pay attention to, since it can caused complications. Otherwise, since there’s no treatment, all we can do is the exact same things as we were already doing. We were told to avoid contact sports, but that was fine.

Alas, we were living in the age of the internet. The thing about connective tissue is that it’s everywhere. A concise, yet horrifying metaphor I read on a medical page during my initial research likened a body with EDS to a house built on rotten wood, with rusted nails– structurally unsound.

If EDS can affect any part in the body, then is everything I feel EDS? That’s more or less the question I’ve been asking Google for the past three years. My search history has a lot of this type of thing:
“Feet hurt + EDS”
“Lose voice twice a year Ehlers-Danlos”
“Ehlers-Danlos syndrome ear infection”
“Feel cold a lot EDS”
“locked jaw + EDS”
“EDS stomach hurts”
“EDS I am tired”

The answer I’ve found to basically every iteration of that search is that, yes, EDS makes you more susceptible to almost everything. It can damage your circulation and muscle tone, slacken the ligaments in your feet, stress your vocal chords, lead to soreness in your jaw, and cause chronic fatigue. No matter what ailment I google, someone else has already asked the same question.

With that said, a lot of those things are also just part of what it means to live in a human body, with all its quirks, aches, and abnormalities. EDS causes stomachaches, but also, everyone get stomachaches. How can I tell which type of stomachache I have, and does it even matter? I have so many questions for Google and the universe, like, if I didn’t have EDS, would I have to deal with this cough I’ve been fighting for two weeks now? Would my immune system be better suited to fight this infection? Where does EDS end and my body begin?

I also know that you can’t make that distinction. If it runs through every cell of you, it’s part of you, or at least part of you at this moment– not something you can excise and imagine yourself without.

You can’t look into the parallel universe in which you were born without whatever genetic condition you were born with, where your jaw glides smoothly and your feet never hurt. It’s tempting to Google every fleeting possible symptom, and of course, it’s useful to understand the illness you live with.

Still after a point, every time I opened google, I knew I wasn’t looking for information I could use. I wasn’t looking up physical therapists or treatment updates. I was trying to peer into an unknowable world, and to some degree, I was looking to Google to validate my symptoms, to tell me my pains were real. There was no longer a purpose to answering these questions– only trusting my own perceptions, accepting uncertainty and the hand of cards dealt.


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