An open letter to teachers of children with invisible illness

I know that teachers want to do the best for my children with invisible illness, I can see it in their face. I’m not blaming them or shaming them, the opposite in fact, I want to help them. I wonder if they have ever asked themselves at the end of a hard day; Have I thought of everything? Could I have done more today? What can I do next? This may help to come at it from a different angle.


Dear Teacher…

What can you do as a teacher to help my children? Take the time to learn, I know you are experienced and may have taught many children with special needs but every child is unique, including my children. Read their notes, ask questions of us as parents, of the SENCO, Occupational Therapists and Physiotherapists involved in their care. Most importantly get to know my child and how their needs affect them in a school day and remember their condition may vary from day to day or even within the same day. Once you do get to know them then you will spot the signs of tiredness and pain much more easily, putting the adaptations and rest breaks in place will become much easier too .

We don’t expect you to know it all, as parents we learn every day, since our children’s symptoms started, we have read extensively about their conditions, we keep up to date with any developments and network with other parents. We spend the most time them and are most definitely the experts in their care. Our knowledge and personal experiences may mean we appear over fussy and protective but we fully understand the impact that bad management in childhood can have in later life, both with their bodies autonomic system and with damage to their joints.

You must accept that your teaching style or classroom organisation may have to change. These may be simple things like; allowing them 5 minutes to stretch after a long assembly before they sit down in class to work, having their coat peg in a position where they won’t be knocked by other children or sitting down for 2 or 3 minutes while you give the instructions to the class in PE before the task begins.  However it may sometimes involve carefully pacing all their activities and planning in rest breaks to avoid them falling into a nasty cycle of fatigue.  Please do not underestimate the impact that these changes can have on a child.

You will need to think ahead when planning school trips, outings, lengthy rehearsals and sports day. You have to carefully consider the impact that it may have on them including what extra support they will need in order to fully participate. When everything is planned and considered the knock on affects for their health later that day or week can be greatly minimised. We will do our utmost to tell you if something different has happened at home or before school, if they have had an injury, are in a flare or are particularly fatigued. Please make this easy to do, don’t always tell us how bad their day has been at the end of a school day when they are listening. We try so hard as parents to give them a positive self image and to be positive about their condition. While we need to know what has happened please consider what will be the best way to communicate by email, link book, text or telephone call.


You will need to communicate with the other professionals that are involved with our children from the lunch time assistants to other teachers, teaching assistants, the school nurse, Physiotherapists and Occupational Therapists.  We appreciate that you are all very busy but it is very difficult for us to become everyone’s PA, ensuring open lines of communication between all parties.  If you keep us regularly informed we will not keep bothering you for updates.

Please be flexible with homework, while our children are often competent enough for the tasks that you set, school is hard work for our children as they struggle to be ‘normal’ all day. This takes a lot of concentration and is very tiring. When our children get home from school, they are often exhausted and have to rest, it can be difficult to get them to do their homework. Remember that we often have Physiotherapy or Occupational Therapy to do with our children in the evenings and at the weekends and they may have attended appointments as well.  We value their school work, we do, after all our children will need to use their brains!  However we also value the importance of them being children, attending clubs such as ‘cubs’ and ‘swimming’ outside school is important too.  Keeping all the balls in the air can be hard work, requiring great skill.

It is common for children with health conditions to be affected emotionally. While my children are confident, don’t let that confidence fool you, they are fully aware of their differences. My older child chooses not to discuss this with his friends, he doesn’t want any undue attention but he understands that to manage this he has to communicate with the adults at school. This requires trust. My younger child is feeling left behind by the children in the playground, it bothers her. If these issues aren’t managed well they will become compounded and will affect their work in school. Involve the children, put the ‘child’ into a ‘child centred approach’, talk to them. We are trusting you with the most precious things in our lives to educate them and manage their care during school hours. As a teacher you are ‘responsible for the progress and development of all pupils’ and with this privilege comes great responsibility. For those 6 hours a day we rely on your knowledge of our children and your skill of being able to recognise the subtle cues about their health. If you act on what you see by pacing, simple classroom adaptations, chill out time, hydration and changing position regularly you will help them to manage their condition and ultimately improve their health. Rather than the alternative, to sink deeper into a flare, become more fatigued or to have more injuries. All that has to be better for their education?

So much time and effort is spent dealing with our children’s health it becomes important not to overlook their strengths, like all children they want to do well and they need your approval. There will be areas of the curriculum that they always find tricky, we know that, so when they are good at something please don’t forget to give them their chance to shine! In the words of Magic Johnson ‘All kids need is a little help, a little hope and somebody who believes in them.’

Missed part 1 of this post? You can find it HERE

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