Your healthcare appointments are a chance for you to get important information about your condition and raise any concerns about issues such as side-effects of medication.
Here are some tips to help you get the most out of those appointments.
Getting the most out of your appointments
As a young person with arthritis, you're likely to have regular appointments with a variety of healthcare professionals.
It's important to get the most out of your time with rheumatology consultants, doctors, nurses, physiotherapists and occupational therapists, so you get the information and the help you need to manage your condition.
Don't be afraid of asking a question. Remember no question will ever be too big or too small, and will certainly never be stupid.
Becoming more independent
You may be used to seeing your healthcare team with a parent or carer present, but as you get older you'll be encouraged to be seen for some or all of your consultation alone. This is a great opportunity to get comfortable with seeing healthcare professionals on your own, and discuss issues privately.
But it's your choice, if you want to take a parent, carer or friend to your appointment you can, or you can ask for a chaperone.
Don't be afraid to express yourself
It's important to talk honestly with the healthcare professionals looking after your care, your body is still growing and developing and it is vital your treatment keeps up with that. Talk to them about the medicine you're on and what effect it's having - good or bad.
Just be yourself, and be honest and open.
If a drug isn't working for you, or if you're experiencing side-effects that are hard to manage, let your healthcare team know, as there may be different treatments they can try.
The healthcare team are not just concerned about your medication, they know there are lots of things going on in young people's lives and they can give you support and information in those areas too.
Do talk to them if you have worries about how your condition impacts on any aspects of your life, including:
- school, college, university
- relationships with friends, relatives or partners
- your favourite activities, interests and hobbies.
As you get older, topics often crop up that you'd rather discuss without your parent or carer present.
For example, you might want to ask about how alcohol affects your treatment or ask for advice about sexual health, relationships and contraception.
Sharing any worries and asking questions is important.
You have the right to have private discussions with your doctor, nurse or therapist. This means that they won't tell anyone else what you discuss with them.
The only situations where your doctor might need to talk to someone about the information you have shared is if they think:
- you're at risk of harm, either from yourself or from someone else
- you're at risk of harming someone else.
In these situations, your healthcare professional has a duty to inform the correct people. They should tell you
- what they need to say
- how this will be done
- who they'll say it to and when
- what will happen next.
Taking a list of questions on your phone, tablet or piece of paper might be useful to help you remember anything you want to discuss or ask.
Make sure you don't miss a consultation without letting them know, as the wait for the next one could be long. Remember to update your contact details if you move house or get a new number.
If you see a new healthcare professional, visit their department's website before your first visit to find out where you're going.
Find out how to get support between appointments
If you're under the care of a rheumatology department, it's important to find out how you can contact people in between appointments.
All clinics have a system where you can contact them between appointments if you have a flare up or are worried about your health or treatment.
This may be a helpline which allows you to phone one of the healthcare professionals directly. Or, it may be a messaging service where you leave your name and number and they will call you back.
The systems vary, make sure you know how yours works so that you can get support urgently if you need it.
Pharmacists are also very good sources of information about medication, and they may well be able to answer your question. They will refer you to the relevant healthcare professional if they can't answer your question.
You should never stop taking any prescribed medication before talking to your healthcare team. If you've accidently missed some medicines or have another concern tell your team.
Speak to your GP
When you're in adult services, your GP will be the coordinator of your care and may also supply some or all of your medication. Your rheumatology team will work closely with your GP to make sure they've got the right information.
If you haven't had much contact with your GP in the past it's worth making an appointment to discuss your care, get to know your GP and their team and find out how to order medicines.
Talk to friends and family
Talking to your friends and family outside of your consultation, about your treatment and how you're feeling may be helpful. Parents, relatives and friends can be a huge and vital support during difficult times.
Healthcare is mainly divided into children’s services (paediatrics) and adult services. In some places around the country there are adolescent centres which people attend in between children’s services and adult services.
If you're aged 16–18 when you first go to a hospital, you're likely to go straight into adult services, but if you were diagnosed before this time then you'll probably need to move from paediatric rheumatology to adult rheumatology.
This can be both exciting and cause some worry, but being seen in an adult setting is a positive sign of your increasing independence.
The process where you move from one rheumatology service into one aimed at people of an older age is called ‘transition’. Paediatric services are different to adult services but knowing what to expect will help you make the transfer.
Most adult rheumatologists will look after patients who have had arthritis since they were children or teenagers, but this won’t be the majority of their work. You will have the chance to talk to your new rheumatology team about your arthritis and how it’s affected you in the past.
In both settings there will be a team of professionals working together to provide your care – the multidisciplinary team (MDT) – and they share your care with your GP.
Some differences you might notice between the two services are in this table:
|Children's rheumatology department||Adult rheumatology department|
|Consultations are family-focused so you're usually seen with your family||Appointments are usually young-person focused; you're welcome to take family and friends with you but there's more of an emphasis on the healthcare professionals working in partnership with you|
|Often parents or carers are responsible for medicines and treatments but you might be asked questions about your medication||Questions about medicines and treatments will be discussed directly with you|
|A lot of emphasis is put on education and you'll always be asked about school, college or work||Less emphasis on education and work, but you can ask the team if you need help|
|You'll always have your height and weight recorded||You'll usually have your blood pressure and weight recorded, but height is less often measured|
|Appointments are often longer and may be a bit more flexible||Appointments may be shorter than you are used to|
|If you don't come to an appointment, the team are likely to ring or text you to find out why and offer another one||The team may not contact you if you don't attend an appointment and it's likely to be your responsibility to book another one|
|Medicines often supplied by the hospital||Medicines often supplied by your GP, who shares the care of your treatment with the hospital|
|Some discussion of topics such as sexual health, contraception, alcohol||Topics such as sexual health, alcohol, contraception and planning pregnancy will very often be discussed in more detail|
What happens during transition?
The process of transition varies in different places around the country, but it's always centred around what's right for you. If your team hasn’t mentioned it then ask them how transition works in their service and how it could work for you.
You should have transition planning and hopefully will have met your new team and know where the adult clinic is.
You should also have had some practice at, and be comfortable with, being seen alone as well as with your parent, carer or friend. When you're in adult services, you can still choose who comes into the consultation with you.
There may be lots of older people in the adult clinic and not a lot of other people your age unless there's a specific young persons’ clinic in your area.
On your first few visits to the adult rheumatology department you may feel a bit out of place if most people are older than you. Remember that people of all ages with many different problems need to visit healthcare services and the way in which arthritis has impacted on other people could be completely different from how it will affect you.
In England, many people have to pay prescription costs for drugs.
As a young person with arthritis, it's important to check whether you are in one of the groups of people entitled to free medication.
You don't have to pay prescription costs in England if you're:
- under 16
- 16, 17 or 18 and in full-time education at a school, college or university
- pregnant or have had a baby within the last 12 months
- receiving certain benefits or your family is receiving certain tax credits.
People with certain health conditions are entitled to free medication. However, JIA isn't one of those conditions.
NHS Low Income Scheme
If you're aged 16 or over and on a low income, you may be entitled to help through the NHS Low Income Scheme.
Students aged 19 and over aren't automatically entitled to free prescriptions. However, many do qualify through the NHS Low Income Scheme.
The scheme is based on your income and not your parents' income - unless you live with them. You can pick up a HC1 form from a JobCentre Plus or by visiting NHS Help with Health Costs.
NHS prescription prepayment certificate (PPC)
If you do have to pay for your prescribed medication, it could work out cheaper to get a prescription prepayment certificate (PPC).
These cover all NHS prescriptions, so could also pay for NHS dental prescriptions, no matter how many you need.
You can get a PPC which lasts or three months or 12 months.
NHS Choices has detailed information about who can claim free prescribed medication, and how to apply. It also has information about PPCs.
In Scotland, Northern Ireland and Wales, prescribed medication is free.
Being in pain and having a chronic health condition like arthritis can sometimes lead to low mood and frustration. These feelings are natural, common and understandable.
You may feel isolated and feel like you struggle to keep up with your friends or your work when you’re feeling unwell, in pain or have hospital appointments.
Sometimes friends and teachers might not understand any difficulties you experience because symptoms like pain can be ‘hidden’.
You may feel guilty that you need to rely on other people for help and support from time to time.
It's important to remember there are lots of other young people with arthritis – it’s estimated there are about 16,000 young people in the UK with JIA.
Many people who had arthritis when they were young have had successful and happy lives. They've started families and done well in their careers.
Everyone relies on friends an family for support when growing up.
While arthritis has lots of challenges, it’s nothing to be ashamed of. There are positive steps you can take to help yourself feel better.
Exercise is very important for your overall health and well-being, and can also help you to manage your condition. When you exercise it releases hormones called endorphins in your body, which can help you feel physically and emotionally better.
Exercise can also improve your self-esteem. Exercising with friends, or meeting new friends through exercise, can also help your self-esteem and your mood. If your arthritis is active, swimming may be good as it doesn't put strain on your joints.
If you haven’t already, talk to your healthcare team about setting up a specific exercise programme of things you enjoy.
Having a balanced, varied and nutritional diet, which is low in fat and has a healthy mixture of the main food groups, is good for your overall health and well-being. Getting five portions of fruit and vegetables a day is important.
An unhealthy diet, with a high intake of saturated fat, refined carbohydrates and processed food, has been consistently linked with poor mental health.
Exercising and having a healthy diet might not immediately take away the pain, frustration or sadness you might be feeling, but they can improve your health and sense of well-being. This in turn can help you sleep better and help you feel more able to cope with challenges and life in general.
Do something you enjoy
It can help if, each day, you manage at least one activity to give you a sense of enjoyment and at least one activity to give you a sense of achievement. These activities don't have to be big or time-consuming.
Talk about it
It’s important you talk to someone you can trust if you’re feeling worried. This can help you make sense of how you’re feeling and often leads to finding solutions or ways forward. Keeping your concerns to yourself may lead you to feel overwhelmed.
If you, or your family, are concerned about your mood being low, it’s important to get help as soon as you can, by visiting your GP or speaking to your healthcare team.
Try to remember you’re not alone, and there are plenty of people who want to help you.
Some paediatric and adolescent rheumatology departments have a psychological service. Some of the issues these services help young people with include:
- coping with difficulties around procedures like blood tests, injections and scans
- adjusting to a new diagnosis or treatment
- coping with symptoms which interfere with life, such as reduced mobility and pain
- finding ways to deal with the questions/reactions of others
- helping others to understand your condition and its impact
- dealing with worries of any kind, but commonly worries about keeping up with your peers, concerns about the future and fears about not making the most of life.
Four of the main therapies often used by psychologists are:
- cognitive behavioural therapy (CBT)
- mindfulness-based stress reduction (MBSR)
- acceptance and commitment therapy (ACT)
- psychodynamic therapy.
Some therapy sessions can involve the whole family or family members, so you and your family can have some time to talk about what’s going on. These are all called talking therapies.
If you’re interested in any of these theories and therapies, ask your rheumatology nurse or consultant if it’s possible to be referred to a psychologist.
Cognitive behavioural therapy
Cognitive behavioural therapy (CBT) is a combination of talking about difficulties and finding different ways to think about them.
One of the aims is to reach an understanding of how you can become affected by vicious circles of interconnected thoughts, feelings, physical sensations and actions about a particular difficulty.
Mindfulness-based stress reduction
Mindfulness-based stress reduction (MBSR) uses meditation-type exercises, sometimes yoga and various mind-body exercises, to help cope with worries and tension. It’s often used as help for pain.
Mindfulness teaches you to pay attention and focus on the present moment.
Acceptance and commitment therapy
Acceptance and commitment therapy, or ACT, is about finding ways to accept things that feel out of your control. At the same time it helps you to make choices and take actions to improve your quality of life, based on what’s most important to you.
With this therapy, you're encouraged to talk freely to the therapist – often simply the first things that come to mind, rather than attempting to shape ideas before they’re said.
There's no need for your thoughts and feelings to be shared in a chronological or linear way, but more in a spontaneous manner without any worry about whether what you're saying is painful, illogical or sounds silly.
If you’re interested in any of these theories and therapies, ask your rheumatology nurse or consultant if it’s possible to be referred to a psychologist.
Starting at secondary school can be both exciting and a bit nerve wracking. But planning and talking to your new teachers will give you every chance of doing well at school and making friends.
Your secondary school will probably be larger than your old school. It will probably:
- have more pupils
- be on a bigger site
- be on more than one floor.
You might feel a bit nervous about changing schools. Don’t worry or bottle things up – talk to someone you trust if you’re ever feeling like this.
Talking to your teachers
Before you start at a new secondary school, you’ll be able to look around and talk to the teachers.
You can go to open evenings and ask the school if you could arrange an individual visit. You might like to go with your occupational therapist or physiotherapist, as well as your parents, to get their advice.
Your teachers may not have met a young person with arthritis before, and talking to them early on about your condition and how it affects you is a good idea. Good things to tell them would be:
- how arthritis can affect you differently on different days
- if you're affected by pain, stiffness and tiredness
- the effect your medication has on you.
Your parents could arrange a meeting with your new school before you start so they're ready to give you the best possible education. They could ask your school to read our information for teachers to help them understand some of the challenges you might face.
If there’s a lift at the school you might be allowed to use that rather than the stairs. If your arthritis means that you struggle to walk, you might be able to ask that your classes are on the ground floor. It might help if you get a locker on the ground floor as well and if you don’t have to carry books home every day.
If you sometimes have lots of pain in your feet or when walking, you might be allowed to wear comfortable trainers at school if that helps.
You may need a special pass for some of these, which you can show to a teacher if you're asked.
Telling your friends
Some people with arthritis are very happy to talk to friends and classmates about their condition; others are less keen to do so. This decision is entirely up to you. You might find that telling some people about your condition makes you feel better. Good friends should be supportive and understanding.
You have nothing to feel embarrassed about, and many young people have a medical condition.
It’s up to you who you tell about your condition. This might be something that you discuss with your parents and teachers first to help you decide who you might want to tell.
If you want to let your classmates know about your condition you could always ask your teacher to tell the class. Your classmates might be very interested in arthritis and want to ask you questions. Practice some short phrases in case someone asks you a question, for example: “I have arthritis which makes my joints painful sometimes.”
You could also perhaps explain how arthritis doesn't just affect older people.
Although it’s unlikely, if you ever experience any teasing or bullying, it’s the school’s responsibility to make sure this is stopped straight away. If this does ever happen, tell your parents and a teacher.
Doing PE and drama
If your arthritis is active, you may not always be able to do PE and drama if they’re particularly physical lessons.
Talk to your PE and drama teachers about how your arthritis can affect you and how you feel when it's bad. You might be able to still take part but in a less intensive way if your arthritis doesn’t allow you to on some occasions.
Remember it’s good to be fully involved in all parts of school life as much as you can and that exercise is important to you staying fit and healthy.
Missing school days
If you need to have time out of school for hospital appointments or treatment, your school will be able to help by providing work for you at home or in hospital so you don’t fall behind. You should also be able to get text books and other learning materials that will help you.
You should be able to talk to your teacher over the phone or by email to get feedback about your work.
It’s important that you or your parents keep in touch with your school. Good communication is always important, but especially if you need time off school.
Some hospitals run clinics for young people in the late afternoon or evenings. If these are available it can allow you to miss less school for appointments and treatments. Ask about this with the doctors and nurses who look after you. There will be someone in this team whose job it is to talk to your school about how you’re doing.
If you have time off school, you might find it tough to fit back in with your friends and classmates when you go back. If you have to miss days, maybe you can keep in touch with your friends by text, email, Skype or letter. Your friends will be missing you and will want to know how you’re getting on.
Coursework and revision
Coursework and exams can be stressful. If you feel stressed, you might find that your arthritis flares up.
Research is being carried out to try to find out whether stress can actually cause flare-ups, but what's for certain is that being anxious and in pain won't be a nice combination. Any steps you can take to avoid stress would help.
If you feel you're getting stressed or anxious when you're doing coursework or revision, try:
- taking breaks
- talking to friends and family about how you're feeling
- taking some long, slow, deep breaths
- continuing to do things you enjoy on days you're studying – such as going for a walk, swimming or reading
- listening to your favourite music.
The information below will help to reduce stress around coursework and exams.
Being organised and working hard early on is a good way to avoid becoming stressed just before an exam or a coursework deadline.
Keep on top of coursework and revision by storing notes, deadlines and exam dates somewhere safe and reliable, such as a laptop, tablet or mobile. Make sure that you give yourself plenty of time to complete assignments and keep track of how much revision you’ve done for each subject with a diary to see which subjects you might need to do more work on.
If you become unwell and you’re worried that it might affect a deadline, talk to your school, college or university as soon as you can. A note from your doctor might help. You might be able to have an extension to coursework deadlines.
Try short sessions
Everyone has slightly different revision techniques. Shorter, good-quality revision sessions are better than longer sessions where you aren’t taking anything in, so you might find that revising in half-hour bursts is better than cramming for hours.
Carrie, 22, who has rheumatoid arthritis, said: “I had to start my revision earlier than most people because I couldn't cram like most people could. When I was in pain, my concentration was the first thing to go.
"You can't be expected to revise for such long periods as your classmates can – some of my classmates could do six-hour stints. I'd have to revise in half hour to one hour stints and then take a break."
It's not good to sit in the same position for a long time. Standing up and doing some stretches or walking around the house every half an hour or an hour can help to keep your joints moving and prevent them becoming stiff and painful.
Exercise is a great stress-buster and it’s also a very important part of managing your condition. Taking a bit of time out for a swim, walk, jog, cycle or Pilates class would be time well spent.
Take regular breaks from your studying. Do something pleasant and enjoyable that can help you relax in between sessions, such as going for a walk, swimming, talking to a friend/relative, listening to music or watching TV.
If you need to rest during a session, take a break. You won’t be able to write or learn anything if you’re too tired. When you wake up, or are rested, you’ll be able to revise and learn better.
Think about your medication
Think about the effect that your medication will have on you and when you’ll be in the best frame of mind and have the most energy to work. Factor this in to your timetable.
If you think your condition might affect your performance in an exam, tell your school, college or university as soon as possible. They might be able to make adjustments to the exam condition to help.
If you’re unable to write a lot in one sitting because of pain in your hands, or elsewhere, you might be entitled to sit an exam in a room on your own and have a scribe. This is someone who is trained to write down what you say so that you don’t have to write. A teacher will also be in the room to invigilate the exam.
You may be given slightly longer for the exam and be allowed to take comfort breaks if sitting for a long exam makes you stiff. Your doctor can write to the school to request this for you.
Exams can be nerve wracking and you'll want to do as well as you can. All you can do is your best. But remember that even if you don't get the results you were hoping for, there will still be plenty of exciting options.
Remember that all your classmates will be worried too and that you’re all in the same boat.
Many young people with arthritis enjoy their time at university and are successful. Planning ahead and being organised will help you to stay well and make the most out of your time there.
Choosing the right subject
It's possible to study any subject when you have arthritis and universities offer plenty of support to overcome any difficulties you may face related to your condition.
You might know exactly what you want to study, but if you’re finding it difficult to choose, think about how your arthritis affects you and find out as much as you can about the course. You could ask yourself the following questions:
- How will I cope with the demands of the course?
- Will I be more likely to do well with an emphasis on coursework or final exams?
- Are there any course requirements which could be difficult for me, such as outdoor field trips?
Choosing the right university
Deciding on the right university may be just as important as picking the right subject. Not all students leave home to go to university, as more young people are choosing to live at home and study locally for financial and other reasons.
Studying close to home may have benefits for you, such as close support from your family if you become unwell and keeping the same GP, rheumatology team and pharmacist.
If there are few suitable universities or courses locally, you could look into distance learning opportunities such as those offered by the Open University.
If you decide to move away, it’s important to visit the universities you're considering. Try to answer these questions:
- How would you manage, both while you are well and if you became unwell?
- How spread out are the university buildings?
- How far away would you be living from your building?
- What's the journey like to your parents'/carers' home?
All universities have a team supporting the well-being of students, often called the Student Support Office or Student Welfare Office.
Contact them before you apply to discuss what support and arrangements they can offer. It's a good idea to talk to them about your arthritis.
Once you've been accepted at a university, it's very important to get in touch with their Student Support Office as soon as possible so they can help with issues such as accommodation.
The sooner you get in touch with them and tell them about your condition, the more help they'll be able to offer. They'll work with you to determine what support you need and help you to arrange it. They may be able to help with:
- finance, for example helping you to process a Disabled Students' Allowance application (see below)
- accommodation, for example helping you get a room on the ground floor and close to where you study
- informing course leaders and tutors if you become unwell or need extra support
- getting extended coursework deadlines if you become unwell
- getting special conditions during exams, including breaks, extra time or a scribe (a person to write your answers as you say them)
- accessing counselling.
You may feel you don't need extra support at the moment, but it's a good idea to talk to a Student Support Officer anyway. Arthritis is unpredictable and having a plan in place will make things much easier if you do suffer a flare-up.
Disabled Students' Allowance (DSA)
You may be entitled to financial and practical support through the Disabled Students' Allowance (DSA). This could provide funding for items like:
- ergonomic chairs
- electronic equipment to record lectures.
For more information, visit www.gov.uk.
Managing your arthritis
As you've grown up, you've probably taken on more responsibility for managing your arthritis. You may already organise your doctors appointments and repeat prescriptions. If you're not yet taking a lead role, preparing for university may be a good time to start, even if you plan to live at home for now.
Review what you know about your condition and the treatments you're on. Read more about JIA.
Looking after yourself by eating well, exercising regularly and getting enough sleep will help you to perform to your best and make the most of university. Read more about how you can help yourself.
Remember that having a chronic condition like arthritis can affect your emotions as well. It's not uncommon to experience low mood and feel frustrated or isolated. Read more about feelings and emotions.
Arthritis is unpredictable. Even if you've been well for a long time, it's important to know what to do if:
- your condition changes
- you have a flare-up
- you suffer side-effects from your medication
- you get an infection.
Find out how to contact your rheumatology team – most have a phone number for advice and urgent appointments.
Managing your medical appointments and medication
Registering with a new GP
If you're moving to a new area, you'll need to register with a GP there. If you get any regular prescriptions from your GP, you'll need to discuss this with the new GP and it's a good idea to take a letter with you from your rheumatologist.
Know how to make an appointment with your GP and how to use their out-of-hours service. Check where the nearest walk-in centre and accident and emergency services are and how you would get there. You can also contact NHS 111 when you need urgent medical help or advice but it's not a life-threatening situation.
Registering with a rheumatologist
Talk to your rheumatologist and specialist nurse as soon as you know which university you're going to. You'll need to consider your options about accessing a rheumatologist:
|Stay with your existing rheumatology team||you're not moving far and can still attend appointments|
|Transfer to a new rheumatology team near university||you usually stay there during term time and holidays|
|Stay in touch with your existing rheumatology team and meet a new rheumatology team near university||you spend part of the year in each place|
Your existing rheumatologist may be able to recommend a rheumatologist in your new area. Alternatively, you should make an appointment with your new GP as soon as possible and ask to be referred to a local rheumatologist. Ask whether there's a rheumatologist who specialises in caring for teenagers and young adults.
If you stay in touch with two rheumatology teams, it's important that just one of the rheumatologists prescribes your medication and has overall responsibility for your care. The other rheumatology service provides a back-up if things change and you need a review.
Your prescribing rheumatologist will need to check any recent blood test results before prescribing some medications. If you have blood tests done somewhere else, you should ask for the results to be sent to the person prescribing your medication or take a copy with you to your next appointment.
If the new rheumatology team will take over prescribing your medication, talk to your existing rheumatologist and specialist nurse as early as possible. It may take several weeks or months from the time a referral letter is sent to your first appointment with the new rheumatologist. If you have medication by injection or infusion, it may then be another few weeks before you receive your first course of treatment.
If you don’t get an appointment with the new rheumatologist in good time to continue your supply of medication, you should contact them, explain the situation and ask for an earlier appointment. Alternatively, contact your existing rheumatology team and arrange to return there temporarily. The sooner you let someone know, the better.
You may have regular appointments with a rheumatologist or specialist nurse, and for blood tests (depending on what medications you take). It's important to attend these appointments or to get in touch to reschedule if you can't attend.
Taking your medication
Taking your medications as prescribed helps to prevent flare-ups. It's a good idea to put a reminder in your diary or calendar to order more medication before you run out.
You're eligible for free prescriptions while you're aged 16–18 years old and in full-time education. After this, you have to pay for your prescriptions unless you qualify for certain benefits, such as Income Support.
The current prescription charge is £8.20 per item. Prescription prepayment certificates (PPC) are available in England. A 12-month certificate costs £104.00 and could save you money if you need 13 or more prescribed items in a year. PPCs are available by 10 monthly direct debit instalments. For more information, visit www.nhs.uk
Recording all your appointments in a diary or calendar should help you to remember them. Make sure you save the information in a couple of places in case your diary or phone gets lost.
Carrie, 22, who has rheumatoid arthritis, said: "When I went to university, I had a family organiser calendar, the ones which have different columns for different members of the family.
"I used difference columns for different parts of my life – for example my social life, my studies and my healthcare. I needed two for my healthcare!
"This really helped me to stay organised and all my details of appointments and other important things I needed to remember were in one place. I could see if there was a clash. These calendars are in stationery and book shops."
When Carrie did need urgent medical support while she was living away at university, she found that the 111 NHS telephone service was very good.
"I called them up because I didn't want to be sitting in a hospital waiting room for a long time," Carrie said.
"It allowed me to book an appointment and because they had access to my medical information it meant that they were better prepared to help me."
University is a great chance to make new friends, enjoy a vibrant social life and perhaps meet a partner. Read more about relationships.
Friends at university support one another practically and emotionally. Some people prefer to tell all their friends about their arthritis, while others tell very few people. Do what feels right for you, but you may find it helpful to tell at least a few trusted friends who can be more considerate when you're having a bad day and will understand if you opt out of certain activities such as drinking alcohol. Read more about alcohol.
Francesca, 21, who was diagnosed with juvenile idiopathic arthritis during her teenage years, said: "When I lived away at university, I wanted to socialise but I wanted to do so without drinking. Early on, I told people that I couldn't drink because of the medication I was on and then people didn't ask me if I wanted a drink after that."
University life can be very busy with work and socialising, so don’t push yourself to do absolutely everything. It’s important to:
- listen to your body
- pace yourself
- prioritise the activities which are most important to you.
Read more about planning, prioritising and pacing.
While you'll no doubt enjoy the greater freedom that living away from home offers, remember that talking to your parents/carers on a regular basis can be very reassuring and helpful.
Being away from home and looking after yourself for the first time may be difficult and lonely. Most people struggle from time to time and it can help to talk things through with friends, family or a professional. The Student Support Office could look at any extra practical help you might benefit from and put you in touch with a counsellor.
Many young people with arthritis enjoy their time at university and are successful. Planning ahead and being organised will help you to stay well and make the most out of your time there.
This toolkit might come in handy when you are discussing your needs with your university.
Alcohol can be a big part of social life.
Choosing not to drink alcohol because of your condition and your medication is a sensible decision. It may also be the safest thing to do. But if you’re going to drink alcohol, it’s always best to know your limits and to be sensible. Take it easy and listen to your body.
Your tolerance to alcohol
Everyone responds differently to alcohol. This can be due to many factors, including height, weight, gender and how much sleep you've had recently.
Your tolerance will usually be lower if you haven’t eaten, because the alcohol will go into your bloodstream quicker. Food in your stomach will absorb some of the alcohol.
Arthritis medications such as steroids and methotrexate can also lower your tolerance of alcohol. Your tolerance could be much lower than your peers.
Alcohol and medication
If drinking alcohol on your medication makes you feel ill, it’s probably best to avoid it completely. Stay well within safe limits by making sure you have at least 3-4 alcohol-free days every week. If you do drink, stick to just one or two.
It’s advisable not to binge drink, which means drinking lots of alcohol in one go.
Government guidelines state that people shouldn’t drink more than 14 units of alcohol per week. Here's a rough guide to units:
|Standard glass of wine (175 ml)||2.3 units|
|Pint of standard-strength beer (ABV 4%)||2.3 units|
|Spirits - single (25ml)||1 unit|
Alcohol and other people
Recent findings from the Office for National Statistics have shown that the number of young adults drinking alcohol, and also the amount being drunk, has fallen in the past two years.
If your friends are pressuring you to drink after you've told them about your arthritis and your medication, they aren’t being very good friends.
If you have any concerns on this subject, talk to your rheumatology consultant, nurse specialist or a GP for advice.
When you start a new relationship, you might wonder when to talk about your arthritis.
When should I tell a new partner about my arthritis?
Your arthritis may feel like a barrier, so it’s better to share your story about arthritis relatively early in a relationship.
You might not want to tell someone everything the first time you meet them and you might want to wait until you have built up trust, and you feel respect and a level of commitment on both sides. But telling them means they can help you and you won’t feel uncomfortable if you’re having a flare-up when you see them.
Your partner is likely to ask a few questions and be interested to know how it has affected your life.
There's no right or wrong way, or time, to start a conversation about your arthritis. You might find it a bit nerve-wracking, but follow your gut and do what feels right for you.
What happens after I tell them?
When you've shared your story about arthritis with your partner, find the right balance between being open and honest about how arthritis affects you while not spending the whole time dwelling on the negative aspects. You won’t want your arthritis to dominate all your topics of conversation with your partner.
It’s also important to stress that while arthritis is a part of your life, it doesn’t define you and that you're an independent person.
Your arthritis is nothing to be ashamed of, and if someone you like has an issue with what you tell them, they’re not the one for you.
If the conversation goes well, you'll feel much better afterwards and your relationship will be stronger as a result.
Clare Latham was diagnosed with juvenile idiopathic arthritis when she was two years old. She travelled around Australia and South East Asia in her early twenties and has kindly provided ths advice on travelling.
Do your research
Before you go, do some research. Top-quality guidebooks have useful information. Find out where the nearest chemist, doctors' surgery and hospital to where you're staying are located.
Talk to your rheumatology consultant or nurse specialist about where you're thinking of going and how long for. They'll advise you on issues such as vaccinations and how much medication you'll need to take.
Pack appropriately. If you're going somewhere cold, take warm clothes and maybe a hot-water bottle.
You'll definitely need travel insurance and you must tell them all about your condition. If you don't, they might refuse to help if your condition flares up.
Shop around for the best travel insurance quote. Most companies appreciate that a lot of people have a pre-existing condition, so the premium shouldn't be too high. Price comparison websites are a good place to start.
If you're over 16 and travelling in Europe you should also apply for a European Health Insurance Card (EHIC). This allows you to access state-provided healthcare in the European Economic Area (EEA) countries, including Switzerland, at a reduced cost or sometimes for free. This isn't an alternative to travel insurance, so it's important that you have both a EHIC and a valid private travel insurance policy.
Think about your medication
You might need a doctor's note to say that you need to carry your medication with you. Take your prescription with you as this can be further proof you need your medication, and can help if you lose your medication.
Stay organised with taking your medication – have a diary and keep tablets in plastic containers that have days printed on them. Ask your consultant or nurse if you'll need to take into account time differences and adjust medication timings, particularly for places that are over two hours ahead or behind UK time.
If your medication must be kept in a fridge, tell anyone else who has access to the fridge. You might need to put a note on the door.
Look after yourself
Remember that alcohol can interfere with medication. If you do have a drink, be sensible and know your limits. It's best not to drink alcohol on an empty stomach and having plenty of water or other soft drinks would be good, especially if you're in a hot climate. Your alcohol tolerance levels are likely to be greatly reduced if you're already dehydrated because it's hot.
Some medicines and some conditions make your skin more sensitive to the sun. Use sun cream to avoid burning. If you've had joint injections and they cause changes to your skin at the injection site, take extra care and use a higher factor sun cream because your skin may be thinner and can burn much more easily.
Pack as light as you feasibly can and put some serious thought into what sort of bag or suitcase you want to take. There are suitcases on the market which you can push rather than pull, which may be a good option. You could try a few out in the shop first.
Keep in touch with friends and family back home and give them contact details for where you're staying. Let them know where you are and how you're feeling. Take a good mobile phone with you, and before you go call up your mobile phone operator to ask about network coverage in the area where you're going.
If the mobile phone company you're with doesn't have good network coverage where you're going to, another one might.
Though you probably won't need it, it wouldn't do any harm finding out what the local emergency services contact number is. Perhaps try to learn a few key phrases as well.
It's a good idea to tell friends you're with and people in positions of responsibility (such as hotel or hostel staff; or an employer) about your condition and possible symptoms in case you get poorly.
And importantly: Take lots of photographs and have fun!
Staying up late with your friends to watch your favourite bands and camping under the stars is a lot of fun.
It's important to keep safe at festivals, especially if you’re taking drugs for arthritis.
Take your mobile with you. Lots of festivals have devices you can buy to recharge mobiles.
It’s advisable to tell at least one person you’re going with about your condition, the limitations it may have on you and the medication you’re on.
It’s very important to find out where the first aid post is, and if possible set up your tent close to it.
If your arthritis is bad in the days before the festival, it’s worth contacting your rheumatology team or GP to see if there's any additional therapy which would enable you to go.
Make sure that you’ve taken your medication before you go, especially if you need to take a weekly injection.
If you need to take tablets with you, organise them before you go and take them in a safe container.
Some medicines and conditions make your skin more sensitive to the sun. Joint injections can cause skin changes and make the skin thinner at the site of the injection, so it can burn much more easily. Take care when out in the sun and use a high-factor sun cream.
Remember that some drugs for arthritis carry a serious warning to avoid alcohol and unprotected sex.