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EspañolMoving to adult doctors
Around 16-18, your follow-up moves from children’s services to adult services. This transition is prepared in advance with the team that follows you, so nothing gets lost.
Children & teens
Teens’ space your health, your life
Your illness is part of your life, but it does not define it. Little by little, you can take an active role in your care.
My tips
Talking about your illness
You choose who you tell and what you say. A few simple sentences, prepared in advance, help you explain it to your friends or a new teacher.
Our teens’ sheet (PDF, in French) ↗Preparing your appointment
Write down your questions before the appointment, and ask to see the doctor alone for a while if you wish: it is your right.
Preparing for your appointmentStudies and career choices
In higher education, the disability service at each university or college helps you obtain adjustments for studies and exams. Your wishes come first: the illness adapts, not the other way round.
Rights and proceduresHow others see you
An invisible illness can lead to teasing. In case of bullying, 3018 answers free of charge, 7 days a week, from 9 am to 11 pm, by phone, chat or app.
3018 ↗How you feel matters too
Living with a chronic illness can feel heavy at times. If you often feel sad or worn out, talk to someone you trust. In France, Fil Santé Jeunes listens anonymously on 0 800 235 236, from 9 am to 11 pm.
Fil Santé Jeunes ↗My ready-made sentences
Hard to find the words? Copy a sentence in one click, then send it by message or keep it in your notes. Of course, you can change it to suit you.
To a friend
“I have an illness called EDS. It makes me tired and in pain, even if it doesn’t show.”
“If I have to leave early or cancel, it’s not about you: my body decides on those days.”
“You don’t need to understand everything. The most important thing is that you believe me.”
To a teacher
“I have a chronic illness. Sometimes I need to step out for a few minutes or sit down. Could we agree on a discreet signal?”
“I have an individual care plan (PAI): you can ask the school nurse or the head of year to show it to you.”
“When I’m absent, can I get the lessons by email or from a classmate?”
To the PE teacher or coach
“I can take part, but I avoid jumps, contact and forced stretching, because my joints dislocate easily.”
“If I stop, it’s not laziness: I need a break so I don’t get hurt or faint.”
On a work placement or at work
“I have an invisible illness. I’m motivated, but I need a few adjustments: being able to sit down, take breaks and have water.”
“If I faint, lie me down, raise my legs and give me time to recover.”
When someone says “You don’t look sick”
“Thanks! But many illnesses don’t show. What you see isn’t what I feel.”
“I make an effort to look fine. That doesn’t mean I’m not in pain.”
My energy today
With a chronic illness, energy works like a battery. Choose your level for today to find out how to pace it.
Full battery: enjoy it, but keep some in reserve
It’s a good day! Do what you enjoy, but avoid spending it all at once: otherwise, fatigue may catch up with you tomorrow.
Well charged: a normal day, with breaks
You can go to your lessons and do an activity you enjoy. Still plan a real break during the day, and drink regularly.
Half: choose what matters most
Lessons or going out, but not both at full speed. Save the rest for another day, and rest after whatever takes the most effort.
Nearly empty: switch to power-saving mode
Only do the minimum. You’re allowed to cancel without feeling guilty: let your friends or teacher know, and save your energy to recover.
Flat: your body needs to recharge
Today is a rest day. Stay calm, let school know if needed, and talk to your parents or doctor if it lasts several days.
Going out and parties
Your illness shouldn’t stop you from seeing your friends. A few tips to enjoy yourself without using up all your energy.
Before you leave
Eat a little something that agrees with you, drink plenty, and take a suitable snack and a bottle of water. Rest for a while beforehand if you can.
When you get there
Find out where you can sit and where the toilets are. Take breaks before you’re exhausted, and avoid standing still for a long time.
Eating with others
Order something small, choose what goes down well, and don’t force yourself. Nobody needs to comment on your plate.
Dare to say no
You can say no, arrive later or leave earlier. Suggest something else: a film night at home is going out too!
A friend who knows
Explain to at least one friend what to do if you faint. You’ll feel calmer, and so will they.
Alcohol and smoking
Alcohol can make fainting spells and digestive problems worse, and doesn’t mix well with some treatments. Talk about it with your doctor, openly.
My health card on my phone
Create an image with your important information and set it as your lock screen: if you faint, emergency services will see it without having to unlock your phone.
On iPhone
Open the image in Photos, tap “Share”, then “Use as Wallpaper”. You can also fill in your Medical ID in the Health app.
On Android
Open the image in your gallery, then “Set as wallpaper” and “Lock screen”. Also check “Emergency information” in the settings.
Moving to adult doctors: my checklist
Around 18, your care moves to adult doctors. Tick off the steps as you go: your boxes stay saved on your device.
0 step(s) ticked out of 12
Your questions
Will I be able to study what I want?
Yes. Adjustments exist at secondary school and in higher education: extra time in exams, a computer, an adapted timetable… Talk to your school’s disability service early.
Will I be able to get my driving licence?
In most cases, yes. If you often feel faint, talk to your doctor: some situations require the opinion of an approved doctor before driving.
How do I explain it to my friends?
No need to tell everything. One or two sentences are enough, for example: “I have an illness that makes me tired and in pain, even if it doesn’t show.” Our teen sheet gives you more ideas.
I’d like to talk to other young people who are ill. Is that possible?
Yes! Our meetings are open to members and their families. Ask your parents to write to us, and we’ll tell you how to join.
Important information
This page gives general guidance. It does not replace the advice of the doctors who look after you.
My games
Three games to stand up to bullying, test what you know and find out who can help you.
Ages 11 to 16
Sophie’s chat (in French)
In the class group chat, messages are making fun of Sophie and her invisible illness. It’s up to you to choose how to reply: every choice changes the end of the story.
Open the game full size ↗ FR
Ages 9 to 15, alone or in a team
Sophie’s escape game (in French)
Sophie is locked in the Body Lab! Go through the 4 rooms, solve each puzzle about EDS and gastroparesis, and find the code to set her free.
Open the game full size ↗ FR
Ages 9 and up
Who treats what? (in French)
Gastroenterologist, physiotherapist, occupational therapist… Match each specialist with what they treat, so you know who can help you.
Open the game full size ↗ FR
Parents, teens: let’s talk
Other families are going through the same thing. Our meet-ups are open to members and their loved ones: a great way to share tips and experiences.