Raising a child with an invisible illness: Ehlers Danlos Syndrome

teen with invisible illness

LM is your typical pre-teen. She is silly, stroppy, giggly, shouty, loving, stubborn and very silly (seriously that needs to be there twice). First impressions most people would make is that she is small for her age, very slight in build, active, happy and healthy. And yes she is all of those things, but those first impressions are where the problem lies.

You see LM has an invisible illness and unless you have watched her joints popping in and out and bending in ways they really shouldn’t, or have lived through the endless nights filled with tears you’d never really know she was different to any other child her age.

LM has Ehlers Danlos Syndrome. There are many types of this syndrome, but she has the Hypermobility Type (formerly known as type 3). It is sometimes referred to as Hypermobility Syndrome, not to be confused with hypermobility or being “double jointed”.

LM’s invisible illness means that she is at risk of any and all of her joints dislocating or subluxing (moving out of place but not fully dislocated). Her wrist bones move apart by themselves and need clicking back together. She struggles to stand for long periods and gets dizzy every time she stands up. This is just a quick summary I will do another post to explain in more detail about growing up with Ehlers Danlos Syndrome soon.

It is great that LM looks so “normal” on the outside. She can fit in without having to explain herself if she doesn’t want to. When she is feeling good, being able to pretend there is nothing wrong is a wonderful thing for an almost teenage girl. But sometimes I wonder if having an obvious illness would make life easier for the rest of the world to understand what she goes through.

We have had many looks from strangers over the years when LM was carried on her dad’s back, because she couldn’t walk even one more step, even though her little brother was upset he couldn’t get a piggy back. I’ve had to defend the fact that for two years we needed to travel to Great Ormond Street Hospital because “if she was that bad she’d have a blue badge”. I have sat dumbfounded when a physiotherapist said that the only thing wrong with her was that she was too skinny and she should eat more biscuits and cakes to fatten up a bit. Seriously, this was AFTER her diagnosis!

In LM’s eyes, the worse thing ever to happen was at school and involved her footwear. She wears boots provided by the hospital but she’s only provided one pair at a time and the waiting time between appointments is ridiculous. She is often left without them for anything from a few weeks to a few months when she outgrows them. Finding supportive and comfortable footwear for those in between times is a nightmare and are never 100% suitable meaning she is at her worst physically and mentally. She’s had repeated comments about her footwear (even while actually wearing her boots), the worst coming from the headmaster himself who, in the middle of the busy dining hall, told her that he knew she was waiting for an appointment, but her trainers were unacceptable and we needed to go and buy more appropriate black school shoes.

She was absolutely devastated.

Okay, yes her trainers were white and pink and she had been wearing them for about two months but to pull her up on it in front of pretty much the whole school was totally inappropriate and unacceptable. I knew I couldn’t hold it together if I spoke to him in person so I wrote an extremely long winded and aggrieved letter explaining how upset she was, how much she would love with all her heart to wear normal school shoes. I even pointed out to him that if she had been in a wheel chair he would never have even considered approaching her about it.

I did get a phone call of apology, but not from the head teacher, and nothing has ever been said to LM. Although she has noticed that not a single comment has been made about her uniform since! Hopefully there won’t be any major issues through the rest of her schooling, even if people don’t understand the actual issues, just being understanding of her feelings will go a long way.

As for the future? My hope is that someday society will understand people like LM a little better and know that their pain and illnesses are not just in their heads.

I think we are a long way off from total acceptance of those with invisible illnesses. But maybe, just maybe, by the time she leaves school the world will be a more empathetic place and accept without question, that some days she can conquer the world, yet she won’t be able to lift her arm long enough to brush her hair the next.

Do you have a child with an invisible illness?

invisible illness

Source: Mami2five.com

One Comment

    Alma Mater

    I have EDS, as do my five children. Thank you for posting this.

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