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Raising a child with an invisible illness: Ehlers Danlos Syndrome

This is LM:

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

 

Comments

    • Oh Kim, that is awful about the school not accepting your youngest has hearing problems! I hope it doesn’t affect her too much xxx

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  3. That’s terrible for them to do especially to a young girl. We all know how tough school can be at times. Maybe they could do an assembly on it to raise awareness. You are right though there are many people like your brave daughter suffering with things we couldn’t imagine. It’s always good to think twice before judging

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  5. I can totally sympathise my daughter too has an invisible disability and it can be very frustrating, she is 3 and getting on a bus and not being able to collapse her buggy (she is too unstable to be without) gets a lot of tuts and stares. It is disgraceful the headmaster could show such insensitivity – he needs to be a positive example in embracing differences. It is great you are highlighting, Happy Mothers day xx #Sundaystars

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  6. I can’t believe the head teacher said that! I wouldn’t have been able to take him to task face to face either…sounds like you handled it really well x #sundaystars

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  8. Wow, how judgemental people can be! My nephew has Hypermobility and often cant walk for long distances, so my Sister had to use a buggy until he was five. The looks and comments she used to get were unbelievable! As if you need that on top of everything else. #SundayStars

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    • Some people just look at you like you’re allowing your child to be lazy! I hope your nephew is coping well now x

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  9. I haven’t heard of your daughters illness but your post has really got me thinking about how hard it must be for you all. Its hard enough being a parent without having to watch them go through difficult times. I’m amazed by her treatment at consultations and I’m embarrassed as a teacher to hear that your daughters head teacher reacted so inappropriately to her footwear! I can understand why you feel its even more difficult with an ‘invisible’ illness and your post has been really thought provoking!

    #SundaysStars

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    • Thank you for this comment, the invisible part really is the difficult bit. I think we are all subconsciously guilty of presuming those who look fine are fine, when sometimes that is actually the furthest from the truth, but when someone is already aware of the facts and still disregards them, that is just unforgivable.

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  11. Oh my gosh Katie. This is a beautifully written, yet horribly sad post. I am awe at her bravery, and of yours over the years and cannot imagine what it’s been like for either of you and indeed the rest of your family. And as for that total idiot of a headmaster, I would take that up with the local newspapers and with educational bodies. That made me angry. As you say, other people would never have known, but it really hits home what a daily struggle it is for all of you. I wish you and your stunning LM all the best through this horrid and less well known invisible illness. Steph xxx Thanks for linking up with #SundayStars so much for hosting darling. #SundayStars
    Steph recently posted…Cox & Cox – Spring PicksMy Profile

    Reply

  12. Oh Katie, this is such a beautifully written but heart I can’t believe that the headmaster actually said that to her regarding her trainers. Especially as he knew why she was wearing them. And I think that it is terrible that you didn’t get an apology from the headmaster himself. Adults can be so cruel. Invisible illnesses are terrible. Sometimes i wished that my depression was a broken leg or something that had obvious physical signs. Because people can empathise with that. But now I am older, I realise that it is society’s issue and not mine. And I am not ashamed at all. However, it is much easier to feel and acknowledge that as a 37 year old then it is as a pre-teen, who just wants to be like her friends. Thankfully LM has the best mum in the world to support her through all this. Thanks for hosting Sunday Stars. Hugs Lucy xxxx
    Mrs H recently posted…Pregnancy after miscarriage: Surviving the first trimesterMy Profile

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  13. I, too have a teenager with EDS-H. She has recently started using a cane on her worst of days. But it hesitant in doing so in fear of what others are going to say. It’s terrible that the only way to be believed is that it has to be obvious in nature. I can only hope that soon we will find an effective way of pain control, and in spreading awareness that these things DO exist, and are very real, not ” All in the head.”

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  14. Thank you for this article, I should write a letter like this for my son to each of his teachers. My son had eds hypermobility. His teachers mark down his grades because of poor penmanship and tardiness. His hands get so tired and in pain from writing. Other kids steal his supportive pencil grips and pens, and when he tries to get it back he is reprimanded by the teacher for being disruptive. His knees give out and his school has lots of stairs, but the doctors won’t give an elevator pass becacause they say its good for him to exercise, keep the joints moving. He tires very easily and is very irritable. He is always picked on for being short. I have contacted the school numerous times and it helps for a bit but then starts uo again, I feel like I need to remind them every month.

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  15. I totally understand your struggle and hers! My daughter is 19 and also had EDS Hypermobility type. She got diagnosed about 2 years ago and it explains a lifetime of struggles! Hips that dislocated as an infant, not walking until 3 years old, lots of joint pain and “random” physical issues. Mostly people have been kind to her and she does have a 504 health plan at school (US law that allows for accomodations in school and workplace). It is so hard to watch her struggle day to day and try to cope with everything at such a young age!

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  16. You basically just described my own daughter’s plight. Although the worst part for her was the sports teachers telling her her boots were CAUSING her problems. If she was on crutches they would believe she couldn’t do certain things but if she wasn’t they would make her do activities that would injure her again. Eventually we resorted to doing Distance Ed to finish her schooling. EDS is a constant daily battle for us both. Thank you for sharing your story.

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  17. My 9 year old daughter also suffers with EDS and it can be really frustrating having to discuss with school her limitations and expectations they have of her. Recently my daughter came home very upset as she was expected to run twice around a large field and when she told the teacher she was hurting he told her everyone hurts at some point and to get on with the run!!!! I was horrified. I was shocked that after all I explained to the teachers they comment like above. Needless to say I was not happy and had to have a further discussion.

    Reply

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