Having arthritis when you are a teenager or young adult can seem especially tough. At this age, apart from having to cope with the arthritis and its treatment, you are also faced with a very important time at school or college, with decisions to be made about career choices. Of course you are also facing many changes in your body, and developing new relationships with friends, and perhaps also sexual relationships.

What sort of problems can it cause and how can they be dealt with?

Who can help?

The changing relationship with your doctor

When should planning for transition start?

What sort of problems can it cause and how can they be dealt with?

Having arthritis as a teenager or young adult may limit your lifestyle because of physical problems, for example not being able to walk far and having to rely on others such as parents for transport when friends are taking the bus or train independently.

You may be anxious about developing relationships because you feel you look 'different'. You may feel that your social life is affected because of the restrictions on drinking alcohol if you are taking methotrexate. You may feel singled out for 'special' attention by teachers, parents and doctors, and this or the arthritis may mean that you miss time from school, college or work.

Planning your future can be difficult because of uncertainty about how your arthritis affects you. Your education may be affected if you miss school or college through being unwell at times. Remember, though, that most people with JA do get through education successfully, and investing effort in school or college work can help you for a number of years in adult life by giving you more options in terms of work or further studies.

Occasionally there might be problems with bullying at school. If you are being bullied it is important to discuss such problems with friends, your parents and your teacher. This often stops the bullying quickly and with little fuss. Do not let the problem linger.

Sometimes young people stop taking their medication, wearing their splints and doing their exercises. Even if you are tempted to do this, please don’t, as it is likely to make your arthritis worse. There are ways of dealing with problems like these and they can be overcome, especially with help and support from other people. Although teenagers without arthritis may not realise their good luck, remember that they too may be having a difficult time and may be struggling with many of the same problems as you.

Who can help?

Your doctor, nurse and therapists are often aware of many of the concerns you will have and will welcome you asking for advice; there is a lot of help available, much of which is mentioned in this and other booklets. It is very important that you discuss concerns with your rheumatology team, other health professionals or a tutor/teacher – they may be able to help directly or point you in the direction of someone who can help.

Arthritis Ireland supports young people with arthritis through its JA Programme. Further information is available by emailing ja@arthritisireland.ie. Arthritis Ireland also publishes a Fizz Transition Pack which is available through your rheumatology clinic.

The changing relationship with your doctor

As you grow older, your relationship with your doctor changes. As a child, your doctor would have tended to talk about you to your parents. You probably did not have much say in deciding about your treatment, and your parents were responsible for your health care. As an adult you are expected to see a doctor on your own, explain your problems, understand the explanations and treatments given, and be responsible for your appointments and taking medication.

Transition involves this changeover of roles – you take on more responsibility for your own health care and your care is transferred from a children's department to an adult rheumatology department. This may involve a change of doctor, physiotherapist, occupational therapist, nurse, and usually a change of hospital, maybe in a different town or city. All this change can be difficult for you, your parents and your doctor.

You will probably need to discuss with your parents when you want to see the doctor on your own. Many parents have difficulty in 'letting go' and you may want to see the doctor with your parent(s) present for a few times, with your parents taking a 'back seat', before you see the doctor alone.

It is important that you know as much as you can about your arthritis, the treatment options and the likely outcome of your arthritis. Patient education is a very important role of the rheumatology team and you should feel free to ask questions. This should help build the relationship between you and your doctor. This relationship needs to be open, frank and with both sides able to discuss issues in a friendly manner, and with you being involved in the decision-making process. You should expect the opportunity to ask questions and understand the replies. All this takes time – it may not always be possible in a busy clinic – but at least you should be told about how to get more information. If you are better informed, you will feel more in control. This usually means you cope better with your arthritis and are able to plan your future with greater certainty.

When should planning for transition start?

Planning for transition needs to start early (ideally as soon as possible once arthritis has been diagnosed), and needs to be carefully co-ordinated between you, your family, your school and the rheumatology team. Transition is a gradual process that occurs within the day-to-day activities of family life, and school life. The transition process varies from place to place.
Ideally, the plan for transition should be a written plan: Your paediatric rheumatology team should be responsible for drawing it up, and ideally you and your family should be involved. 

You should be given a written copy when it is done. The transition plan should include details of the adult rheumatology team, the hospital, plans for monitoring of medication and an approximate date for transfer to adult health care.

It is important that you and your doctor discuss your future. Your doctor may be able to give advice on how your arthritis may be in the future – information that is vital to planning your higher education, career and work. If you have arthritis, the school – and your timetable and routine – may have to be adapted to allow you to get to and around school. Your physiotherapist and occupational therapist will often give advice on this.

Your transition plan is assessed on a yearly basis and should be completed prior to transfer to the adult services. Your doctor will be able to give you a copy of your records as well.