Just So Stories

Before I was diagnosed, I had a lot of things about me that were just odd. Really unusual for either someone my age, or just humans in general, and they all had “explanations”.

I call them the Just So Stories, since they work a bit like Rudyard Kipling’s stories of the same name – They give a reason for things being as they are, with no factual basis, but they sound plausible to a child because they’re internally consistent. And since EDS, before it becomes painful and symptomatic, is made of a dozen tiny non-symptoms, there were plenty;

My nose was always crooked, even before breaking it multiple times as an adult, because a nurse had to break it to fit a feeding tube when I was a baby. (Actually, it’s what a deviated septum looks like from the outside, which is really common in EDS)

Likewise, one nostril was bigger than the other because of being on a ventilator for so long. (Actually, it’s all part of that EDS deviated septum)

I had striae basically from birth because I was premature, and then because I grew so tall. (Actually, it’s another external manifestation of tissue fragility. No matter how slowly we grow, our dermis rips like wet tissue paper)

I failed to finish meals and then ended up eating between them because I was lazy and easily distracted (Premature satiety and sudden ravenous hunger are common in EDS due to problems with the stretch receptors in the stomach, and delayed gastric emptying.)

My veins were all very blue and visible because being on a lot of IV drips as a baby made them rise up to the surface (They’re not that near the surface, but EDS skin is unusually translucent. You can also see the margins between muscles and tendons as light and dark patches)

I had growing pains right up to my mid-20s because I was so tall (Stop right there! True “growing pains” aren’t growth-linked and should stop by age 12. They’re also more common in hypermobile and active children anyway. The pain I was feeling was the pain of walking on hyperextended knees and often subluxated hips.)

I had back pain my whole life because I’d fallen off a horse when I was young, and never been to a doctor (Actually, it turned out to be three slipped discs and a trapped nerve, due to the connective tissue around the spine being so weak).

I walked with a slouch because I was lazy and undermotivated (My spine is unusually curved, giving me a dowager’s hump from my mid-teens, as well as scoliosis. All common in most EDSes).

My handwriting was terrible because I was deliberately being difficult (I have no sense of proprioception, and writing for more than two or three lines has always made my hands cramp and wrists subluxate. Pretty much diagnostic for EDS).

I was always constipated because I found going to the toilet boring, and it was a reflection on my character that I didn’t have the patience to digest normally (Slow gut transit, with the associated constipation or impaction, is common in EDS and usually shows up long before the joints start getting too painful.)

I was always covered in bruises because I was clumsy and careless and didn’t look after myself (Again, fragile tissue. I could brush my hair too hard and bruise my scalp).

I was always exhausted, and suffered from terrible insomnia, because I thought it was “cool” to stay up late (EDS messes with the adrenal glands, so insomnia and disturbed sleep, or odd sleeping patterns in general, are de rigeur.)

I was a terrible runner but a great swimmer because I wanted to be different (Or we could take another look at those hyperextensible knees and the pain that goes with them).

I said that getting teeth pulled was painful because I was hysterical (It’s now been proven a few times that, like a lot of  zebras, I really am completely insensitive to *caine anaesthetics, so I really did have four teeth removed and three root canals with no anaesthesia before the age of eighteen. And people wonder why I’m frightened of dentists until they prove that they’re not pliers-jockeys.)

I was depressed and lethargic because I had no sense of perspective, and there was no such thing as depression in the trenches (Actually there was, they just called it shellshock and they sent people back to Blighty for it. And the same EDS-realted adrenal fuck-ups that cause sleeplessness also cause anxiety and depression, which will be made a lot worse by everyone around you telling you that you’re not in pain, not exhausted and not depressed, when you clearly are.)

…And that’s just a few of the ones I was told, and in some cases which I was forced to believe, even though I had direct knowledge that they weren’t true – Particularly the ones about my mental state. Really, no teenager will subject themselves to sleeping for about three hours a night for five years just to seem “cool”.

If you have a child who seems to have a lot about them that’s odd, stop relying on just-so stories. Don’t assume that everything has a trivial cause, or tha things are “just so”. If the child is suffering, just take them to a doctor. If the child has a lot about them which doesn’t cause immediate problems, but which is obviously “not right” (Again, children really don’t usually develop whole-body stretch marks before puberty) take them to a doctor.

it’s not a sign of weakness, it’s not being a bad parent, it’s just that sometimes being safe is better than being sorry.

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3 thoughts on “Just So Stories

  1. Absolutely.

    More generally, I am appalled by how many times people with clearly serious medical problems consult a bunch of random strangers on the internet to see what’s wrong. That is Facebook btw. Sometimes symptoms indicating a stroke for goodness sake (I am not making that one up).

    Why guess when you could ask a qualified medical professional? It’s beyond me.

    The stories we are told as children mark us for life Percy eg my sister was told she was thick, but that I was a genius. Neither was true of course. But it set up decades of destructive sibling rivalry (not surprisingly).

    Cathy xxxx

    • Have you happened across the teenage craze of self-diagnosis yet? On one hand, I’m pleased that young people increasingly have the vocabulary to say “No, my state of being is not ‘just normal’, there’s something wrong with me and I want help” but on the other it does sometimes feel like they’re collecting Cool Diagnoses like they were Pokemon (I vaguely remember that when I was a teenager it was a Cool Diagnosis to be depressed or bipolar on the internet. Nowadays it’s DID, BPD, Aspergers’ and the various Cluster disorders, generally all at once).

      And of course, the more that people do it, the more unhelpful it gets. I can see the benefit in happening across a patient group whose symptoms you think you fit, and hanging around with them whilst you work on getting diagnosed, but by this point it’s like the Man Who Was Thursday, and there’s none of the original people who are really showing symptoms in the group, just a collection of basically-worried-well teenagers all trying to be the Most Sick and pantomiming what they think the symptoms should be.

  2. I’m too old to have experienced this Percy. In my day there were no ‘labels’ just shame and ignorance. Maybe it’s gone too far the other way now!

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