When you’re not feeling well, it can be difficult to think about the future and what it may hold. As you start to feel better, you may feel like to want to start discussing how to get back to normal. Here are a few ideas to think about and details of people to talk to about any worries or concerns.
Will I ever be completely well?
This depends on your condition. Some are called life long or chronic conditions because you will always have them, but some of these improve as you get older. Other conditions are called life-limiting, in that they may affect how long you live or what you can do when you’re older.
Some conditions disappear completely by the time you’re grown up, but some may just become a bit better. Your doctor or clinical nurse specialist is the best person to explain about this – the medical word used is prognosis.
Talk about how you feel about finding this information out with your parents or someone else you trust, perhaps making a list of questions to ask as well.
Will I be able to have a normal life?
In the vast majority of cases, there’s no reason why you shouldn’t be able to do what your friends do, but remember that you might have to do things differently. Some sports and activities might be more difficult or you might need to approach them differently. Talk to your clinical nurse specialist about this. There are plenty of disability sports organisations that can help too – details are at the end of this page.
Drinking alcohol to excess is always a bad idea, whether or not you have an illness or condition. It may also react with medicines you are taking so always check with your doctor, nurse or pharmacist.
Contraception may also be affected by your medicines, so check before you start taking the contraceptive pill, for instance. Barrier contraception such as condoms might be safer – they also protect you from sexually transmitted infections – but remember to use one each time you sleep with your partner.
Moving on to adult health services
In health care, we use the word transition to describe the process of planning, preparing and moving on from children’s health care to adult health care. Transition is a gradual process. It gives everyone time to talk about what health care you will need as an adult, choose which adult hospital or services are best for you and make sure you are ready to make the move.
One of the main differences between children’s and adult health services is the amount of independence and responsibility you will be given. This means that you need to learn about your condition, so that you can be more involved in your care and make decisions for yourself.
You will need to be able to give information about your condition and know how to keep yourself well. Although this can be scary, it is also good to have more control over your health and the care you are given. When you are asked to make decisions about your health, you will be given all the information you need to make the right choice.
You can always ask questions and let staff know if you are not sure about anything. They will make sure that you understand everything that might be involved. Although you, rather than your parents, will be asked to make decisions, you can still ask their advice before making your choice.
Will I be able to go to college or university?
Again, this depends on your condition. In many cases though, there is usually no reason why you shouldn’t go to college or university. If you have special needs of any kind, most colleges can offer you support, so it is worth checking what support is available when you’re applying.
You should also think about where you would like to go to college or university, particularly if you need regular check ups or monitoring. Your team at Great Ormond Street Hospital (GOSH) can advise you about facilities at other hospitals, and you might choose a college near a hospital with the right facilities for you. You don’t have to limit your choices to colleges near home – part of becoming a student is moving away from home and gaining independence.
What about relationships and having children?
You might be worried about telling people about your condition. Talk to a member of your medical or nursing team. They can help you find ways to tell other people, and to prepare answers to any questions. You might find practising with someone you trust will help you. Remember that your condition is part of you, not the other way around. It won’t matter to real friends – they will appreciate you for who you are.
When it comes to having children, again, this depends on your condition. Some conditions are genetic, that is, they are passed from one generation to another through your genes. Your doctor will be able to explain whether your condition is genetic and if so, the chances of passing it on to any children you have in the future.
They may also advise you to see a genetic counsellor to talk about pregnancy and having children. Some treatments can affect your chances of having children in the future – your doctor will be able to tell you what help will be available to you.
Are there any jobs I should avoid?
Again, this depends on your condition. Some eye conditions that affect your field of vision (seeing out of the corner of your eye) will mean you can’t drive, which will limit the jobs you can take. If you have seizures, you probably won’t be able to drive either. If you take certain medicines that make you drowsy, you might have to avoid working with machinery.
The Adolescent team can talk to you about how your condition might affect your work prospects and give you details of the many organisations that work with people with disabilities to get them into the workplace.
Ref: 2012C0092 July 2012
Compiled by the Adolescent team in collaboration with the Child and Family Information Group