My Fears
Growing up is hard – even without having a condition like CGD. You may feel that CGD affects lots of parts of your life, like your social life and your self-image.
What fears are nagging away at you? School? Friends? Family? The future?
In this section we look at some common worries – and give you advice on tackling them.
» Fears about social life
» Fears about independence
» Fears about treatment
» Fears about living with symptoms
Fears about social life
I worry about…
Not being able to join in
When you’re diagnosed with CGD, you’re advised not to do some things – like swimming in lakes. That can be hard, especially when your friends are doing things you can’t. Perhaps you feel it’s difficult to make close friends because your CGD restricts what you can do.
Why not take the initiative? Make a list of things you can do and suggest your friends join you. You could introduce them to an activity they hadn’t even thought about trying before such as fencing or golf.
Friends
Every young person has problems with friends at some point. And if you have CGD, friendships can be even trickier.
Young people with CGD often don’t tell their friends about their condition – perhaps because the symptoms can be embarrassing, or they don’t want to explain why they take medicine all the time. But friends are more likely to understand and help you if they know.
Some young people with CGD find it easier to have a small group of friends who know about their condition. They can help when it comes to explaining to other people (or helping to change the subject, if that’s what you prefer).
Self-image
As a young person with CGD, you may look younger and not be as tall as other people the same age, because the condition affects your growth.
Girls may find this isn’t so much of a problem. Being a smaller girl often feels less of an issue than being a boy who is not as tall as his friends. Plus girls generally have a milder form of CGD than boys, so have fewer symptoms.
Other people
People can be very understanding and supportive of your condition. But not always. If you look well and ‘normal’, they may think, ‘How can you have a rare condition that needs daily medication?’ or ‘What do you mean you can’t do this in case you catch an infection?’
Trying to explain CGD can be frustrating and tiring, and you might find questions like ‘Will you grow out of it?’ or ‘I know just how you feel’ really irritating!
Try to remember that sometimes people simply don’t understand. They feel embarrassed and don’t know how to act or what to say. It’s not just children and young people who might feel like this – adults can too. They’re just as capable of putting their foot in it!
You don’t have to tell anyone you have CGD, but you may find it helps if a few people (for example, your favourite teacher) know so they can help you if you need it.
Feeling different
When you have CGD, you may find there are lots of reminders that you’re ‘different’. Even if you tend to feel well, taking medicine is likely to remind you of your condition daily. As is special treatment, like using the disabled or staff toilet at school.
People saying things like ‘You did really well, considering your condition’ might annoy you. It’s sometimes hard to forget throwaway comments.
If you want to talk to someone about feeling different and are finding things difficult, try your GP. They can put you in touch with someone who can help, such as a counsellor.
You may also be able to refer yourself to a counsellor and psychology services through the Improving Access to Psychological Therapies (IAPT) service. Visit the IAPT website for a list of services in your region.
Bullying
Being a bit smaller than others in your class can sometimes lead to bullying. People with CGD also sometimes have problems with acne-type spots and smelly armpits (their bodies can’t get rid of bacteria, causing a smell), which can make them feel different and a target for bullies.
If you’re being bullied, speak to someone about it – your parents, a teacher or someone at the CGD Society. You can also contact BullyingUK on 0808 800 222 or visit www.bullying.org.uk
Fears about independence
I worry about…
Coping with my parents
It’s common for parents of children with chronic conditions like CGD to want to protect them and wrap them in cotton wool. You may have found this yourself.
As you get older and start to value your independence, you may find yourself arguing more with your parents. You want to do one thing but they want you to do something else.
Remember, they have your best interests at heart. If your parents nag you to take your medication or not to go out so much it’s because they don’t want you to get ill.
Try telling your parents what you’re feeling – ‘When I’m well, I really want to make up for the things I’ve missed and enjoy myself like everyone else.’ Remember, they need reassurance. After all, your CGD, through no fault of your own, has caused them a lot of anxiety. They used to look after your health and social life, now you’re starting to do this for yourself and they’re worried.
Reassure them you’ll tell them if you’re feeling unwell, and take your medicines when you’re supposed to.
If you feel you’re not getting along, it may help to get advice from someone else removed from your family setting.
Growing up
Growing up with CGD means you’ve probably had periods of ill health, no doubt some stays in hospital and lots of adapting to life where you’re always at risk of picking up an infection.
This means you may have missed some school and perhaps fallen behind academically.
As you grow up, you may have to cope with your friends moving on to face new academic, social and sporting challenges while your illness holds you back. You may feel worried about how you can grow up with CGD.
But despite setbacks, there’s no reason why you shouldn’t lead as ‘normal’ a life as anyone else – going to college or university, getting a job, getting married and having a family.
School
When you have CGD, school can be challenging. You can spend a lot of time there feeling unwell and having to do things that make you feel different, like going to the toilet often. When you’re younger, you may also find your energy levels are really low and you get tired a lot.
When you’re ill – and especially if you’re in hospital – you may find your work suffers, making you feel anxious.
Schools can help make your time there less stressful by working to understand your condition with you and your parents. For example, they can let you sit by the door in lessons so you can go to the toilet without drawing attention from classmates. They can also organise extra lessons to help you catch up.
If you and your parents feel that your school could do with more information about CGD, contact our specialist CGD nurse. She can even come to your school to talk to the staff.
Fears about treatment
I worry about…
Dealing with doctors
Doctors can seem intimidating. That’s especially true if you haven’t met them before or they turn up at your hospital bed with loads of students. You may also feel like they’re talking down to you. Doctors and nurses are usually very busy, and can sometimes forget that you have the right to be spoken to appropriately and get all the information you need.
They may also be guilty of ‘not hearing’ what you or your parents/carers have to say. Perhaps they think they’ve seen it all before. But your situation is unique and there’s nobody who knows more about how you feel than you.
If you’ve had a bad experience, you may feel like you have less trust in your doctors and nurses. But you have rights too.
Not understanding what's going on
Information about your condition can be difficult to take in, especially if it’s about a new drugs regime or treatment. But you have the right to know what’s going on with your health.
Remember, don’t be afraid:
• To say if you don’t understand something.
• To ask the doctor to repeat what he or she said or to explain further. You can even ask them to draw a picture if it’ll help you.
• To say how you feel. If you don’t want medical students in your appointments or you don’t want the staff to talk about something in front of you, say so.
• To phone back after an appointment if you have extra questions, or didn’t understand something.
• To keep a notepad, so you can jot down questions for your doctors when they pop into your head. If you feel shy or scared when you see them, you can just hand them the pad.
• To ask questions about whether treatments will be painful or make you feel different (grumpy, for example). You can also ask if they’ll stop you taking part in activities, like sports, playing a musical instrument or being in the school play.
Staying in hospital
A hospital stay can be really stressful, and sometimes boring. Take your favourite DVDs, games, books and puzzles with you. You may also miss home and your friends, so take some pictures to make you feel comfortable. You can look at them when you’re feeling low. Perhaps your friends could draw you some pictures too.
Coming out of hospital may also be stressful. It’s easy to feel like you’ve been left out of your friends’ activities while you’ve been away. Ask them to visit you and keep you ‘in the loop’
Fears about living with symptoms
I worry about…
Feeling tired
Young people like you with CGD often find it hard to describe what it’s like when they need to sleep. It’s not like you’re a little drowsy – when you’re tired, there’s no alternative but to sleep!
On the whole, young people with CGD don’t have as much energy as their friends. Your body uses up so much just trying to stop infection.
You and your parents can talk to your school about how tiredness is a problem for you. If you’re preparing for exams, talk to the CGD Society about how to apply for a letter giving you extra time.
Taking medicines
Yes, taking medicines can be tedious, especially if you’re feeling well. But you have to do it. Remember that one of the reasons you feel well is because the medicines are doing their job.
As you get older, it’s your responsibility to take your medication. Some young people think that if they forget about their CGD, including taking their medication, it’ll just go away. Of course, it won’t.
If it helps you feel more in control of your condition, ask to see your doctor alone for part of your hospital visits. Or you can see them on your own for the whole visit when you’re 14. If you forget to take your medication, set the alarm on your mobile phone to remind you every day.
Coping with embarrassment
Bowel inflammation can mean you need to go to the toilet a lot and it might smell strongly. That can be embarrassing. Get your parents to speak to your school about letting you use a private toilet, such as the staff toilet, if that would make you feel better.
More information
Read more about moving from children to adult care services (transition).
This information was reviewed by the CGD Clinical Nurse Specialist, March 2020
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