Talk to Someone
As a young person living with CGD, you will have a host of people who work hard to help keep you healthy and well on a daily basis, from doctors and nurses through to family and friends.
And if you ever have any questions about your health, you are probably told to speak to them without hesitation, no matter what the concern. But what if the issue is to do with how you are feeling? Can anyone help then? At the CGD Society, we want young people with CGD to know that there is always someone you can share your concerns with.
How can talking help?
Living with CGD can be extremely stressful - daily medication regimes, not being allowed to do things your friends do and having worries about the future can all take their toll and make you feel anxious or even cross. No-one should have to bottle up such worries, which is why you should talk to someone about your fears. There are all kinds of people you can talk to, from parents through to a psychologist who knows all about CGD.
Who can you talk to?
Parents, relatives and friends
Your mum and dad can be great to talk to - after all, after you, they probably know your condition best. But sometimes this can be part of the problem - there may be times when they are too involved and too close to what's happening to be able to hear your concerns and give you impartial advice. Remember, they have been used to looking after you and may find it hard to let go a bit, especially as you grow from a child into a young person who wants a bit of independence. When you talk to them, you might need to remind them that it's time that you had some say in your life, especially in the discussions about problems and possible treatments that the doctors are suggesting.
Sometimes it's easier to talk about your feelings to relatives, such as an aunt, uncle, cousin or grandparent. As well as being a bit removed from the situation, they also have the advantage of knowing 'all sides' of any situation (after all, they have probably known you all your life and know your parents, too).
Friends give us the opportunity to have fun, to be who we want to be and to feel supported. But everyone knows that being a youngster also involves times when you fall out with your friends - often for small reasons that seem big at the time - and feel like they don't understand you. This may be especially the case if you have CGD - perhaps friends don't understand how you can look so well and yet have a rare condition that occasionally stops you doing things that they do.
But it may help if you are honest with a few of your closest friends and tell what things are really like for you. You can then ask them to explain to others that sometimes you feel well and other times you don't. They can tell them that you might not always be able to join in but you are always still the same 'you'. Telling them how you feel may take some courage but in the long run this openness may help to make your friendship even stronger.
Teachers and school staff
We spend a lot of our time at school when we are growing up, so having a listening ear amongst staff can be a real help. Also, having a teacher or school staff member 'in the know' can help to smooth the path if there are difficulties that arise during the day, especially if your anxieties are about school and friendships (or even something to do with home life that you're a bit concerned about). Perhaps you have a teacher who you really get on with and trust, or it may be there is a teacher whose job is specifically to deal with pupil support or pastoral care and who you can make an appointment to go and see if you need someone to talk to.
Our CGD Clinical Specialist Nurse have a huge amount of experience when it comes to dealing with all aspects of CGD, including the impact it can have on how you feel. The nurse can provide practical help on how to tackle your concerns, as well as making sure that your voice as a young person with CGD is heard - for example, if you have a concern in school, they may be able to help you and your parents by coming to speak to teachers and pupils to help them understand your condition. You can email or leave a phone message for the nurse.
Living with CGD
Living with CGD can have a big impact on your life and expose you to stresses that other people in your life might not even think of. This can make you feel really alone and that no-one is ever going to 'get it'. You may have a range of issues, including:
- School phobia, including difficulties with friends and teachers
- Needle phobia
- Relationship difficulties
- Feelings of anger, frustration and sadness
Your GP may be able to put you in touch with someone who can help you. They may refer you to a counsellor or local psychology services.
You may also be able to refer yourself to a counsellor and psychology services too through a service called Improving Access to Psychological Therapies (IAPT). Visit the IAPT website to see a list of services in your region.
Other people with CGD
It may be that the only person you feel will truly understand how you feel is someone who is going through what you are or has been through it - in other words, someone else with CGD. Contact the CGD Society and we should be able to put you in contact with someone who can chat to you about it all, either on a one-off or ongoing basis.
Call the CGD Society on 0800 987 8988 or use the contact form at the bottom of this page.
This information was reviewed by the CGD Clinical Nurse Specialist, March 2020
Our website contains a wealth of information to help and support you. If you are not able to find the answer to a specific question, feel free to contact us using the form at the bottom of the page or by emailing or calling us. We are here to help.