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Life as a Child with a Chronic Condition

A chronic condition means a type of illness or disability which will be a part of your life for the rest of your life, and will mean medication or other type of medical treatment such as physiotherapy (exercises designed to treat and strengthen your body) and regular visits to the doctor or hospital or both.
If you’ve been diagnosed with a chronic condition, it can be scary and upsetting. You may not know what was happening,  and you will probably have lots of questions. We spoke to Tina, who grew up with a chronic condition on what’s learned over the years, and asked her advice on living well with a health condition.

When I was 11 years old and in my second term of Year 7 I had an epileptic seizure also known as a fit.  This started a process which went on throughout my time at secondary school when the diagnosis of the chronic condition called epilepsy was made and the doctors and specialists finally settled on a lifelong treatment for me.

It was very scary at first, I didn’t know what was happening or why and there are some things that looking back I wish I had known or been told.  I hope this article can help some of you if you are diagnosed with a chronic condition.

Don’t be afraid to ask questions.

I didn’t ask any and as a result I worried more than I needed to.  Fears grew in my head until they became monsters.  If I’d asked my parents questions I know they would have answered them, but I didn’t, so that’s the number one thing I would say to do, is to ask your parents or caregivers.

 

TALK TO THE DOCTOR

 

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It is your body and they will only know what is happening if you tell them.  Also it’s okay to ask the doctor questions, especially the specialists you will probably have been sent to by your doctor.  The specialists have lots of experience in your condition and will be able to answer any worries or questions you have.

 

TALK TO YOUR FRIENDS!

 

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You might get teased or bullied at school because of your condition or they might never mention it at all.  Either way, you will be feeling different and like you stand out.  I promise you, no-one is even thinking about it most of the time because they are too worried about what people think about them to think about you!

In my case it was never mentioned by my friends and I thought it was because they were too embarrassed or horrified or disgusted.  I have spoken to my friends as an adult and I was totally wrong.  They were concerned and worried for me because they loved me and for no other reason.  So talk to them about how you feel.  After all, you’d be there for them wouldn’t you!

 

LET YOURSELF BE SCARED AND WORRIED

 

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It’s a big thing, to be told you have a condition that will last for your entire life and that may mean tablets and treatment.  I had to go to regular hospital appointments and that meant leaving school lessons whilst they were going on (which probably made some people jealous!).

It’s okay to feel angry too.  It isn’t fair, what is happening. Try not to take your anger out on other people though.  That’s not fair on them, and it isn’t their fault.

Remember, having a chronic condition is no-one’s fault.  You and especially your parents will be trying to think of why this happened to you, but a lot of the time you won’t ever find out why.  I didn’t find out why I got epilepsy, but realised eventually that it wasn’t important.  What was important was dealing with it in a positive way.

 

LOOK FOR THE SILVER LINING

 

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There are good things which come out of having a chronic condition.  I feel lucky that I have been able to really understand what it is like to deal with a condition because it has made me more sympathetic and understanding to other people.

It also meant I got out of trying to exercise in PE classes because I had a seizure in one once so the teachers never made me try hard again; that was a good thing from my point of view as I hated it!  It’s important to try and think of positive things which come from your condition as there will be some.

 

ACCEPT LIMITATIONS

 

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It’s true your condition will stop you from doing things that you will see other children doing.  That’s often the hardest part of having a chronic condition.  It may be important to you to speak to children going through the same things and I say do so!

Talking to people who actually know exactly what you are going through is a great way of letting off steam and understanding your condition.  It can also help you see your way around obstacles that may otherwise seem impossible to get round.  Sometimes, just meeting someone who really knows, is enough.  Your doctor, specialist or even your parent or caregiver can help you with this.

 

THE FUTURE

Since I was 11 I have been on tablets for my epilepsy and I stopped having seizures 7 years later.  I still have to take the medication though, otherwise they will start again.  The side effects of the tablets have affected me and you may notice changes to your body.

Ask your specialist about it and ask your doctor and parents to be open and honest with you about all parts of your condition and treatment IF YOU WANT TO.  I know honesty helped me, but it may be that knowing so much will scare you.  You know you best.  But don’t be scared of what you think of in your imagination as I promise you, knowing may scare you for a short while but your imagination will scare you for much longer!

I hope this helps you if you are diagnosed.  If you have a friend who has a chronic condition, let them know you are there for them however they need you to be; simply to hang out with or to talk to about it.

Being diagnosed with a chronic condition may seem like the end of the world but I’m living proof that it isn’t.  As an adult I have travelled to many different countries including Australia and Thailand for four months on my own, I’ve done a tandem sky dive and I have snorkelled on the great barrier reef.  I adapt to take into account my condition, but I don’t let it stop me.  Don’t let it stop you either!

Tina Price-Johnson

A Paralegal and Litigation Assistant by day, and Freelance Writer/Poet by night and weekend, Tina loves history, social studies and biographies, and enjoys writing about almost anything.She lives in London and travels in the UK and abroad whenever she can, and can usually be found wandering around crumbling ruins.

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