Living with arthritis

Accessing healthcare

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
  • work
  • relationships with friends, relatives or partners
  • your favourite activities, interests and hobbies.

Ask questions

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.

Confidentiality

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.

Be organised

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.

Emotions

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.

Staying healthy

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.

School

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.

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.

Be organised

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."

Get moving

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 breaks

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.

Exams

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.

University

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?

Alcohol

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 you’re on medication such as methotrexate and steroids, drinking too much alcohol places more pressure on your liver, and could increase your risk of developing long-term liver problems.

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.

Binge drinking

It’s advisable not to binge drink, which means drinking lots of alcohol in one go.

Government guidelines state that men shouldn’t drink more than 21 units of alcohol per week and women shouldn’t drink more than 14 units of alcohol per week. Here's a rough guide to units:

Drink Units
Standard glass of wine (175 ml) 2.1 units
Large glass of wine (250 ml) 3 units
Pint of higher-strength lager, beer or cider (ABV 5.2%) 3 units

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. 

Relationships

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.

Read more about relationships and sex.

Travelling

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.

Buy insurance

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.

Communicate

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!

Festivals

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.

Preparing

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.

Medication

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.