How to explain my ms as a teen?

It’s been a while now since my ms diagnosis being August 2023 after a bad attack, I’ve had time to process as much as I can of it and I’m learning to accept it as a part of me. The problem is I’m struggling to explain it to my friends at school as some still question me why I’m not in a lot of the time at school since my diagnosis, I’m feeling more comfortable now to tell them but I’m struggling how to honestly. Its a-lot easier with adults since most of the time they already know what it is or have a better understanding. So for any parents maybe who have ms and have to explain it to there kids or teens, how do you explain it? Any advice is greatly appreciated thank you.

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high cc_14…try sending them this youtube video… “this bike has MS”. Hope it helps. FYI I’m not a teenager, so wont pretend I know how it feels to be diagnosed with MS at such a young age, iv just had a long time to learn how to explain MS to other people.

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HI CC ,
My children were 7,13 & 16 when I was diagnosed with benign MS ( meaning there was more than 15 years since the last episode, it was in fact more like 22yrs and I thought nothing of it)
Fast forward to 2010…
When I explained to my children about the MS I was lucky in the fact that at the time my main problem was drop foot so although I could walk unaided I wasn’t going to be competing in the parents race on sports day !
I used the analogy of computing to explain how MS affects the human body. Our bodies have a CPU (central processing unit/brain) which sends millions of messages to the rest of our bodies. However, sometimes things go wrong and with MS certain messages don’t get delivered such as lift your foot so you are less likely to trip.
I answered any questions they had to the best of my ability and kept it pretty simple .
I gave them the link for the MS society in case they wanted to Google stuff and I wanted to make sure it was the right info.
I think with computing it was a subject that they could understand and for me it was a good way of explaining and as the got older I could go into more detail.

Hope this helps a little bit? Well done you for joining the forum and asking questions. :clap::hugs:

Kathryn

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Thank you this is very helpful! I was struggling how to keep it simple or how to go through with explaining it but your advice is greatly helpful :)! Thank you again I greatly appreciate the advice!

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Nicely put. I used the analogy of a robot with wires and motors. If the insulation frays or breaks the motors might get weak or no signal to operate. Good luck
Mick

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The use of a three pin plug used as a demonstration is a standby :smiling_face:

Also just thought of this which may be helpful…

There’s also the shift.ms website, an online community for younger people affected by MS.

:slightly_smiling_face:

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I watched the YouTube clip and was impressed how they replicated numerous symptoms.
It reminded me of an Autism awareness course I did when we had glasses earphones and thick mittens on to simulate some of the feelings with autism. Very thought provoking.
Mick

Hey! I was diagnosed as a teenager and can completely relate.

The honest truth is, they’re never going to be able to truly understand. Not because they’re bad people, but because how can anybody comprehend what being diagnosed with a life long disability feels like, especially at a young age? Some people will be lovely and some people can’t deal, and you’re going to get so frustrated and that’s ok!!

7 years later, I’m processing all over again through counselling about what this really means, but there is still joy there! I have a job, I’ve bought a house and met my fiancé- I promise good things are still to come, things are just going to be a little different.

Betty x

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Them words mean a lot greatly thank you so much, I’m struggling with catching up on school and fearing for the future but hearing what you had to say about things working but out just differently especially with your case similar to mine give me more hope! Thank you for your kind words and advice :slight_smile:

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Hi @CC_14
I was a teen when I was dx, near a quarter century ago. Even trying to explain multiple sclerosis adult to adult can be hit and miss sometimes, same as teenager to teenager, I suppose. What I’ve learnt in all these years is, life may not turn out how you expected it to, but it will turn out alright in the end.
Best regards,
JP

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