TW: childhood medical gaslighting
I was diagnosed at 18 after being diagnosed with patellar instability the year prior. I was a or two day away from flying back to the UK to begin my second year of university. Throughout the first year at uni, my wrists, elbows, shoulders, ankles, and hips had started hurting in the same way as my knees. I went back to the same doctor, he tested the laxity in my shoulder, and it subluxed with extreme ease. He used the Ehlers Danlos Society diagnostic list, and I was genuinely confused how I was considered to be hypermobile. Upon reflection, my ankles and knees had both been dislocating several times a day at the time. It was just so normalised for me that, while it had a major impact on my life, I couldn't comprehend that it was a full-body medical condition. In the three and a bit years since then, I have noticed several childhood signs that something was wrong.
Osteonecrosis. When I was about 5 years old, I “sprained my ankle so bad that it broke.” What actually happened was I had dislocated it, it went untreated for weeks, and it caused osteonecrosis. This happened three more times growing up: pinky finger, big toe, and knee. I believe unexplained osteonecrosis should be formally classified as a sign of hypermobility.
Osgood-Schlatter’s and patellar instability. In middle school I developed Osgood-Schlatter’s when I grew five inches over summer break. This meant that the tendon was tearing off of the bone, and the bone grew a lump where the tendon is to try and reattach it. I have permanent damage to my knees from this, which caused my kneecaps (then my knees) to be the first joints to routinely dislocate. From what I can tell, they went out daily (or more) for seven years before I received a proper diagnosis. These dislocations caused a case of osteonecrosis because I was not allowed to receive acute medical care.
I developed scoliosis, kyphosis, and lordosis due to vertebrae subluxing. I was not born with these conditions
When I was 11, I had a vertebra go out in my upper back. Because adults tend to think kids are overreacting with pain, I wasn’t allowed to get treatment for it. This caused scoliosis.
When I was 13, my atlas went out in my sleep, and I relocated it myself the next day. By then I knew not to say anything because I had “just slept wrong.” I passed out several times in class that day, was given no pain relief whatsoever, and when I finally relocated it, I didn’t even know I had relocated anything. The cascade of subluxing vertebrae also caused kyphosis and lordosis.
Rib cage and shoulder sizes. These spinal issues then caused problems with my rib cage and shoulders.
As a teenager, my shoulders were 2-3 sizes larger than the rest of my body. Now, at 21, they are 7 sizes larger. This has recently caused the associated joints (humerus---shoulder blade---collar bone---sternum---collar bone---shoulder blade---humerus) to dislocate at a drastically higher rate, disproportionately higher than the rest of my joints.
As for my rib cage, it is larger as well. This has resulted in a very uncommon bra size—the band is several sizes larger than “normal.” I also have a few ribs which are permanently dislocated from wearing bras growing up—and not having a safe environment to notify anyone of this pain or to find an accessible alternative.
Inexplicable dislocation. When I was 13, I had my first diagnosed dislocation. My collarbone dislocated from my sternum at a swim meet. No one could explain why, and it took about a week to even be diagnosed.
Mid-teens debilitating joint pain. At 15 my knees started hurting really bad. It got to the point that friends refused to walk to class with me because I walked too slow. When I was 16, I saw a doctor who said there was nothing wrong with me. That it was “teenage girl hormones.” By my 17th birthday, I had a 50% attendance rate for the last period of the day because I couldn’t walk from one classroom to another.
Different heights throughout the day. This is caused by dislocations. For example, I have sacralization, a congenital birth defect which partially fuses the sacrum to the pelvis. Because I am also hypermobile, this causes my pelvis to sublux from my spine several times a day. This means that I measured as different heights throughout the day growing up.
The pain from the sacralization worsened at the same rate as my knees. I was always asked if I got shooting pain, so I assumed that’s what it was. This resulted in a diagnosis taking several years longer than it should have.
I got really bad colds, a lot. I had RSV at 8 months, pneumonia when I was nine (near-fatal high fever), the influenza at 13 (missed weeks of school), and COVID at the end of 2019 (a near-hospitalization case).
Hernias and prolapses. I’m 21 and have several hernias, and have had a few pelvic organ prolapses. Never been pregnant. Furthermore, all but one of the hernias are in super random places. Ya know how hernias have names based on the location? Hiatus, inguinal, femoral, etc. I have several that don’t have names because you’re not supposed to get hernias there.
Now for some more generic issues:
Not understanding why anyone needed help zipping up dresses. It’s so easy for me to reach and do it myself.
Abnormally severe “growing pains.”
“Get over it,” “stop complaining, that’s normal.” I was gaslit into believing all of the pain was normal because I was a “dramatic” kid.
“That’s weird,” “that’s not supposed to happen.” Doctors being really confused why something is going on with you. For me, this might be osteonecrosis as a sober 12 year old with healthy bones or the abdominal wall hernia I got last year from rolling over in bed.
“It’s in your head,” “you’re faking it for attention.” From both medical professionals and the average person on the street, even if you show them objective scientific proof.
Bad headaches/migraines.
Disturbingly translucent skin, I particularly get this after showers. Photo below
Never being able to centre myself on WII balance boards.
Having random allergic reactions.
“Whoa your skin is really soft.” Also, the parent I got EDS from has skin that looks 20 years younger than the other parent even though they're the older one.
Ankles/feet swelling after walking all day. This is related to POTS—poor blood flow.
My body’s thermostat is broken. I can go outside in below freezing weather with just a t-shirt and leggings and sweat, but if I sit inside in the summer I end up cold.
I can’t walk without insoles.
Dental issues: braces, bad wisdom teeth, fillings not sticking, a high palate.
Slow GI tract and diverticular disease.
Lung problems. On top of asthma, I have vocal cord dysfunction.
One of your parents “growing out of” or still having severe allergies.
My translucent hands after a shower
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