Life with aplastic anaemia Having aplastic anaemia as a teenager A guide for teens Advice and tips from young people on how they coped with having aplastic anaemia during their teenage years Finding out you have aplastic anaemia is difficult, and when you are a teenager this comes with its own set of challenges. You will be coming to terms with lots of changes to your lifestyle, your body and your friendships, at the same time as all the usual changes being a teenager brings. But being aware of these things and finding ways to deal with them can really help you as you go through treatment and recovery. This advice page has been put together with the help of young people who have had aplastic anaemia during their teenage years. It looks at the different things that might affect you, like body changes, isolation and relationships, and gives you some top tips and ideas from young people who have been through what’s happening to you right now. Skip to: Your feelings Relationships with your family Your feelings Physical changes Changes to relationships Food and exercise Staying in the loop with school Prefer print? You can also order this guide as a free printed booklet Order one now Your feelings Many young people feel awkward discussing their body and their feelings. Remember that your medical team has looked after young people with aplastic anaemia before. There may be some things that you prefer your parents not to hear. If so, you can always ask to speak to your medical team privately. You may find that you feel sad. You might look different, or your body might not work as it used to. You might find it harder to keep in touch with friends or your boyfriend or girlfriend. Your whole life may feel different. These feelings are normal and can be an important part of processing what’s happening to you. Having aplastic anaemia was hard to understand, especially since it is so rare. I did wonder if I had caught it. Ryan, diagnosed at age 11 Getting help Your hospital may have different people who can advise and support you. They might also suggest that you see a counsellor who can help you talk about your feelings. I spoke with friends and family but also saw a counsellor once a week.” Lesley, diagnosed at age 15 Relationships with parents and other family You may feel that you can’t talk to your parents about the effects of aplastic anaemia on you, because they are already worried about you. Your parents will want to help and support you, but sometimes it can be tricky talking to the people closest to you. You might find that talking with another member of your family can help you understand how you feel, and you may then feel ready to share your feelings with your parents. You might feel that your parents are being overprotective: for example, they may not want you to go out with friends. If you’re feeling that there’s some tension with your parents or other carers, try to have conversations about this before problems get worse. It might help to work out some rules together. Brothers and sisters might feel irritating when you are not feeling well. They might be struggling to understand what is happening to you. They might be jealous of the attention you are getting, which might seem strange to you. They might be anxious and worried about you, making them overprotective and wanting to stay close to you. Trying to see things from each other’s perspectives might help you understand how one another is feeling. Sometimes I wanted my own space, so it’s important to tell your parents or carers that you feel like that, so they don’t worry or take it personally. - Angelica, diagnosed at 12 I think in some ways it is just as difficult, if not more difficult, for siblings, because they often become less of a priority, experience a change in lifestyle, and are constantly faced with the worry about their sibling. - Alex, diagnosed at 12 Physical changes Ask your doctors or nurses about how your medication might affect you physically, and how to best handle this. Some of your medication might have side effects that can affect your weight, hair growth or loss, or your skin. Not everyone experiences the side effects, but it helps to be aware of how your body might change because of your medication. This can help you prepare and think about how to deal with this if you need to. Being a teenager is hard enough without dealing with a serious life-changing condition. It is important to be kind to yourself. If you aren’t able to cope with how you feel, ask for help from your family, friends or the doctors and nurses treating you. Excess hair growth is really difficult, especially if you are going through puberty, because the increase in hair can be pretty embarrassing. Ciclosporin can cause acne [spots]. It made my face and back break out horribly, and that definitely did a number on my self-esteem for a while. Maintaining a good skin care regime can help, but do seek help from a dermatologist [a skin specialist] if you feel you need professional advice. - Ashleigh, diagnosed at 11 I didn’t like having a line in as it was really awkward to do things, and especially at school, people stared at it as they didn’t know what it was. I also got excess hair all over my body due to the medication I took, but actually this wasn’t too bad, as my friends were jealous! - Ryan, diagnosed at 11 I found my hair loss quite exciting (although the process of losing it was very uncomfortable as my head itched quite a lot). I had a wig, but I rarely wore it. As it was winter, I wore beanie hats a lot to keep warm, but enjoyed whipping it off to get a reaction when I was outside! My hair has grown back differently – it is a shade lighter but also it has gone from almost dead straight to wavy and I love it. - Angelica, diagnosed at 12 Changes to relationships This can be a strange time for relationships. Keep talking and be honest with each other about how you are feeling. You might feel irritated by your boyfriend or girlfriend ‘fussing’, but remember that they are worried about you and are trying to help. Try to let them do things for you and help out sometimes. Food and exercise Eating healthy food and keeping active when you can will put you in a strong position for recovery. However, be prepared for your attitudes to food, as well as your appetite, to change. Your energy levels will vary from day to day. Gentle daily exercise is a better option during treatment than sudden bursts of activity. Taking a walk every day is a good start, and this might just be to the end of your bed to begin with. Your medical team will be able to recommend the right levels of exercise for you, as well as advise on other issues around sport. You will need to avoid sports where you can get injured, because low platelets can make you bruise and bleed more easily. Some hospitals may have a programme you can join to help you regain fitness, which your medical team can refer you to. There are also some charities that can support you with fitness programmes via the internet. In high school I liked playing football, rugby and basketball, but I had to stop these during my treatment. I didn’t feel great about this but had to recognise that it was for my own health. I was also able to adapt in some cases, for example I could not play rugby but I could still attend practices and do some activities. Similarly, I couldn’t play football competitively but I could still have a kickabout in the garden or at the park. - Alex, diagnosed at 12 I often felt sad and asked ‘Why me? It’s not fair.’ I couldn’t do the normal fun things I had done before like football and scootering. I found other sports to do and took up badminton to keep fit, which I really enjoy, and I’m in a club now. - Ryan, diagnosed at 11 Staying in the loop with school We recommend that you ask your family to keep your school informed about your treatment. They should be able to help you to get plans into place, both for how it might work right now, and for how it might work in the future. Your main focus is your health, but once you are well on the road to recovery, there will be opportunities for you to continue with your learning and work. Keeping a check on your mental health throughout your recovery will put you in a better position to resume your schoolwork when the time is right. The hospital school teachers came in every day when I was in hospital, and helped me with lessons when I wasn’t too tired. When I went back home, I did group online classes before I was able to go back to school. - Angelica, diagnosed at 12 School and work can definitely be hard to deal with, but in my personal experience it helped to keep my teachers in the loop of the situation right from the start. This helps them be more aware when issues arise, and they note this on your school/ college/university records. This might help you to claim extenuating circumstances for assignments and exams. This can definitely help relieve stress, especially if you are sitting important exams or your final grades depend on getting their assignments done. If the ward you’re on has a tutor, it is paramount that you take advantage of it if you’re able to. - Ashleigh, diagnosed at 11 Manage Cookie Preferences