What is it like to have Ehlers-Danlos syndrome?

It’s May, and May is Ehlers-Danlos syndrome (EDS) awareness month! Brief rundown: EDS is a genetic defect of collagen production. Collagen is everywhere in the body, so having defective collagen can produce a whole bunch of problems.

You may have seen its prevalence estimated at 1 in 5000 people. Don’t be misled! The actual prevalence is closer to 1-2%. Some folks with EDS are asymptomatic aside from being “double-jointed” but others are left totally housebound, bed-bound, or dependent on mobility aids. There are 13 declared subtypes of EDS. The mildest forms may be asymptomatic, but pose the risk of having children with more severe disability. Its most severe subtype causes organ ruptures and aneurysms.

It’s something that can be spread asymptomatically but can cause severe problems… sound familiar? This is why epidemiology is important! My goal as a sociologist is, in part, to spread awareness within the medical community about how prevalent EDS is and its effect on morbidity, so that kids can be diagnosed & treated early on.

I’d like to take the time to describe a bit what having EDS is like. An extremely common comorbidity of EDS is this annoying thing called dysautonomia. Dysautonomia is the inability of the autonomic nervous system to regulate things like digestion, heart rate, body temp, circulation of the blood, etc. and so these automatic processes, for me, produce symptoms of illness.

These symptoms for me include fever or chills, low blood pressure, sore throat from frequent reflux, congestion and cough (same thing), poor appetite, passing out for no reason, and (my least-favorite!) a constant migraine. I’m just like this every day and have been for several years now, including when I was touring and playing music.

Look up the symptoms for COVID-19. See some overlap? Healthy, able-bodied folks my age are reporting symptoms from COVID-19 that are basically identical to what I experience daily from dysautonomia. In addition to this being obviously annoying and uncomfortable–yes, I really do just constantly feel like I have the flu–this also causes me significant anxiety because I have a hard time differentiating between my chronic sickness and things like, well, COVID-19. I basically have to remind myself constantly that, if I’m sick, I will probably know because I’ll get totally destroyed. (And I do.)

Since we are all in this unusual era where we’re collectively more vigilant of illness, symptoms, and other health concerns, it would behoove us–especially generally-healthy folks–to remember for the future that a significant percentage of our society regularly experiences pain, sickness, and discomfort. Just because that’s how we’re born! Please do keep this in mind, when everything goes back to normal, the next time you accuse another person of being lazy or exaggerating illness. Even if that person looks totally healthy like me. You’re not in their body and you don’t know their story.

The world will run a lot more smoothly, now and in the future, if we can remember to be gentle to each other.

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