As I sit right here engaged on my column, with a heating pad wrapped round my hip to settle down a recent injury, I ponder in regards to the similarities amongst these of us with varied uncommon issues.
After all, somebody like me with Ehlers-Danlos syndrome (EDS) faces totally different struggles than somebody with pulmonary hypertension or sickle cell disease, for instance, however what in regards to the threads that tie totally different uncommon issues collectively? Are they maybe extra essential than people who set us aside?
Personally, I’ve by no means met face-to-face with anybody else who has EDS. I’ve heard a pair folks say they know somebody who has it, however I’ve by no means really met them. It’s actually made me take into consideration how I generally simply hand around in my private EDS silo. However is that actually the perfect strategy?
Whereas each illness comes with its personal distinctive struggles, I believe that one factor many people cope with is that in case you have a uncommon illness, it’s, properly, uncommon. You might or could not know others who’ve it and handle the identical stuff you do. And there are moments when that may be irritating.
However then I take into consideration all the folks I do know who produce other diagnoses. I’ve a good friend with rheumatoid arthritis. I do know somebody with alopecia. A member of the family has Crohn’s disease. The record goes on.
So, actually, I’ve a complete community of people that handle uncommon illnesses and issues throughout me. Whereas their particular person signs and struggles are totally different, all of us seemingly handle a few of the identical issues day-after-day, together with fatigue, having to elucidate our situation to others, making an attempt our greatest to interrupt by means of our signs and be as “regular” as doable, and making an attempt to handle ache or discomfort as greatest we are able to.
A few of these extra common phenomena have made me notice that whereas I don’t really know anybody else with EDS, I do know loads of individuals who do perceive what it’s wish to handle a situation that most individuals don’t perceive. In doing so, I’ve come to acknowledge that the higher uncommon illness group is definitely a lot bigger than I ever realized.
Once I began to consider all of the folks I do know who work laborious day-after-day to handle a situation, it actually helped me really feel like I’m much less of an anomaly and extra like a variety of different folks on the market. Having a uncommon illness can really feel isolating, however recognizing the scale and power of a bigger group was eye-opening for me.
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