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Dear Teacher… (Part 1) Helping Teachers to See Invisible Illness

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An Open Letter To Teachers of Children With Invisible Illness

Writing my latest blog entry has been an emotional and cathartic experience.  It is based on supporting my three children through their whole school experience so far. Being a mum to children with physical needs is much more emotionally draining than having those needs yourself. It’s much longer than I planned but once I started writing I has so much to say.  My children have EDS (HMS) or CMT or a combination of the two but I think that teachers and parents of many children with special educational or medical needs will relate to elements of my blog. I have divided the post into two parts the first encourages teachers to look closely.

Dear teacher…

I appreciate how hard it is for you, I am a former teacher. Thirty children in your class; low ability, more able, English as an additional language, disadvantaged pupils, those with special needs like ADHD or autism and then my child in their own unique category, with a medical need that wears a cloak of invisibility.

In my family there is Charcot Marie Tooth disease, a peripheral neuropathy affecting the motor and sensory nerves in the arms and legs causing weakness and sensory loss, one of my 3 children has been diagnosed with this. We also have Ehlers Danlos Syndrome, a problem with the bodies connective tissue, the glue that holds you together. All of the children have symptoms of this to some extent. Ranging from bendiness to pain, fatigue, gastrointestinal problems, easy bruising, skin issues and dizziness. Both conditions are genetically passed on.

What these conditions have in common is that you can’t easily see them. Unless a child has had a dislocation and is wearing a brace or you happen to glance at them when they are ‘w’ siting or have their body in another strange position then they will look like any other child in the class.

You can’t see the orthotics in their shoes trying to align their feet and ankle bones as they walk but you may notice that as the day and week goes on their legs don’t really hold them up any more and they fall and hurt themselves more often, or that you are sending home increasing amounts of letters about injuries.

You can’t see the brace that they wear under their uniform to keep their shoulder in place but you may notice that they aren’t as strong on their dominant side when they throw a ball because of their weakness after a dislocation. You won’t see the knee supports they wear under their school trousers just to stop them aching so much by the end of a school day but you may notice them fidgeting in their seat more as the day goes on or as they try to change position when everything hurts.

You can’t see that they become dizzy on standing (sometimes even sitting), you can’t see that their blood pressure doesn’t regulate correctly, particularly after lunch when their blood is needed to digest their food. You may notice that they need to drink more or they don’t concentrate so much at certain times of the day. You can’t see their fatigue, it in itself has many different forms; where they wake up tired even though they are getting a good nights sleep, where their muscles don’t have the energy to do a simple job, or when they can’t think straight and their brain is ‘foggy’. You won’t really see my children be so physically exhausted that they are nauseous or vomit, we try hard to manage them so that it does not reach this extreme, but sometimes it does.

More often you may see them leaning on a chair, a doorway, a table because they find it hard to stand. You may see them slump over their desk for support because their body finds it tricky holding them in an upright sitting position. You may notice the dark, dark circles beneath their eyes even though they were in bed early every night this week. You might notice them get left behind when running in the playground because they can’t keep up no matter how hard they try or them choosing to play positions on the football pitch where they don’t have to run so much. When the fatigue is particularly bad you may even see a child choose not to join in with their friends because they are so tired, to choose to rest at playtime on their own.

You can’t see pain, but you may see a fidgety child who can’t seem to get comfortable in any position who rubs their joints or struggles getting up from the carpet. Or you may see them fall because their legs give way or their jaw get stuck momentarily as they yawn and it pop back into place. While all of these things are invisible at first glance, for a good teacher, one who is in tune with the needs of the children in their class, if you look closely, you will see. My children are confident, they are bright. They won’t be the ones struggling with the work in class, they are switched on to the job that needs to be done. They will be making progress on the data sheets, but it is important that their condition is never allowed to get in the way of this.

My children have developed many coping strategies and on the most part do not admit that they are in pain, they accept it as normality. One of my children, the one with the most needs, is super independent and determined. A quality I admire and would never like to change but I know it may seem that she doesn’t need your help. She does.

What you may be unaware of is what goes on at home for my children. The fatigue is the trickiest thing to balance the meltdowns after school, the falls. Even when the fatigue is relentless getting to sleep can be really tricky because people with hEDS or hypermobility make extra adrenaline. Once they get to sleep pain and cramp can disturb them at night adding to the fatigue the next day.

You won’t know that we still have to use a buggy for our 5 year old or a scooter so that when she is tired she can be pulled. At home we do endless physio, this is really hard when everyone is tired at the end of a school day but so important to build stamina and stay strong. You won’t see the gators tucked under the bed for stretching, the numerous gym balls dotted around the house or the designated drawer in the kitchen for therobands and hand putty. You won’t realise all of the hospital appointments that the children attend both before and after school adding to the length of their day. In half a term one of my children attended 8 hospital, GP or Physio appointments and I have had 7 lengthy phone calls with different professional involved in their care. You may not be aware how important stamina is for our children, taking part in sports crucial. Please don’t think that because they worked hard and got man of the match playing football for the school team that they are better now. What you don’t see is the pay off for that reward, two days of severe pain and a week off of school recovering because symptoms have flared up. Is it all worth it? Yes. They are children and these memories are important. Will we stop them attending a party at the weekend, playing football or even climbing trees at Go Ape? No. We plan, pace, limit the risks, brace where we need to and not relax for a minute but we will let them be children, have a go, sometimes fail and get up and try again and be prepared for the pay off later.

What you may not know is that as these conditions are genetic one of the parents will be affected. Usually painting on their smile and pretending that the pain, fatigue and autonomic dysfunction as well as daily dislocations and subluxations just aren’t happening. After all there isn’t time for all of that!  Living with the conditions ourselves we understand the struggle to be ‘normal’ and we know that what they are experiencing is real.  Remember, the most powerful thing you can say to a child with an invisible illness is… ‘I believe you’.

Do you want to know what you could do to help these children in school? Check out DEAR TEACHER… PART 2 – AN OPEN LETTER TO TEACHERS OF CHILDREN WITH INVISIBLE ILLNESS








  1. Excellent post I am just trying to come to terms with EDS as an adult (Obv I had it all my life but only kicked in in my early 30s) and I find it so hard to get my head around pacing. I can't imagine how difficult it is for a child or their mum!

  2. Thank you Jenny, I've found a few families with both EDS and CMT dotted around the world since I started My Stripy Life, maybe we are not as rare as I first thought. I hope the testing went well? My youngest is under the neuromuscular unit at GOSH. I've read some of your blog posts already! I loved the one for rare disease day – I picked it up on SNJ I think!

  3. Brilliant, brilliant post. I have a weird type of EDS and my son underwent testing for what could be CMT or HNPP yesterday – I suspect this is a new path we are about to walk (or stagger) along. I can't comment with my blog name but please do come and find me at

  4. Thank you!
    Do you mind if I share this with my son's teachers? Can't wait for Part 2.
    Again, many thanks,

  5. I grew up suffering with EDS plus autism, Tourettes and ADHD, but none of them were diagnosed until I was older. As you can probably imagine, I was often considered to be 'lazy' when I was slumped over my desk, sitting at the side of the playground because I felt dizzy instead of playing with the other children or passing out during a cross country session. I didn't have braces either, I suffered immensely, regularly sublaxing my knees in particular. EDS is a horrible condition to have and is made worse by the fact you can't see it. Even now I am older I struggle with it because I am an otherwise healthy looking 26 year old (although apparently I look 12) but I have to sit in the priority seats on the bus. Anyway I've rattled on again! Great blog 🙂

    • Thank you Lenci, I was diagnosed at 36, 30 years after I was first hospitalised unable to walk with hip pain so I really feel what you are saying. I am just a mum trying to do my best to make things a little different for my children. It's quite funny when your in your mid 30's and still asked how old you are to buy a bottle of wine in tesco ; )

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