Arthritis

School, college and university

In this section young people talk about what it’s like having arthritis whilst studying at school, college or university. They discuss getting help with:
 
• Practical things, like note-taking 
• Emotional matters (when they were feeling down) 
• Money 
 
They also talk about friendships and bullying, fitting medication and hospital appointments around school and studies, and when they felt they needed more support.
 
Practical support
People had received lots of practical support to help them at school or later on in further and higher education. This could be more formal coming from schools or informal provided by their friends or parents.
 
People who had problems with their wrists, hands or fingers had difficulties writing. This caused problems when they had to make notes or do exams. Sometimes people had a teaching assistant who could write or take notes on their behalf. David Y had somebody to write for him in an exam but felt this added more pressure. Ryan preferred Maths because he didn’t have to write as much. Chantelle’s teaching assistant helped her cut out patterns for her fashion course. Teachers and lecturers could print off notes so people didn’t have to write things down. People could also take breaks from writing and were given longer time to finish work or do exams. When Lu had a flare up one year her university postponed her exams by a month.
 
Health professionals often had to write to exam boards explaining why people needed longer in exams.
 
Technology, such as Dictaphones and laptops, could make life easier. Elly used dictation software on her computer which typed what she said. It worked well for English but not for Maths or Languages. Cat had a special chair which stopped her from seizing up.
If people fell behind with their work then teaching assistants could help them catch up.
If people had difficulties moving between classrooms they could sometimes leave one lesson early so they weren’t late for the next lesson.

Friends and teaching assistants could carry heavy bags. Ryan’s friends carried his dinner for him in the canteen. Sometimes people were given lockers so they could store what they didn’t need during the day. Chantelle used a bag with wheels on so she didn’t have to lift it. If people had difficulties climbing stairs they were given special permission to use lifts.
When people had difficulties sitting down for too long in lessons they were sometimes allowed to take breaks from work in order to stretch and move about. Sabrina struggled to stand for long in drama and spent a lot of time sitting down instead. She was given a cushion to sit on because she found the chairs uncomfortable. Melissa used to spend an hour a day in the staff room with her teaching assistant doing exercises.
 
Sometimes people didn’t want the support on offer because they didn’t want to be different from their friends or draw attention to their arthritis. Sabrina didn’t want a laptop in lessons because she would be distracted and not get on with her work, and Jenna didn’t want help getting changed for PE.
Emotional support
Emotional support was important when people felt upset, depressed, worried or frustrated. It was often friends who listened and tried to understand. They helped out by doing things like carrying PE kit, walking slowly so people could keep up.
 
Teaching assistants and counsellors could also provide support for people to cope with difficult emotions (see ‘Coping with emotions’).
Help with money
People talked about the different kinds of financial support they received. For example, college students talked about disabled person’s rail cards and bus passes. University students sometimes received Disabled Students’ Allowances (DSAs). These are funds that can be used to buy equipment like special chairs and computers. Elly went to study in Spain and Portugal as part of her languages degree. Her university paid for flights back to the UK so she could see her doctor (see ‘Money and financial support’).
 
Social life and bullying
Most of the people we spoke to didn’t have a problem making friends (see ‘Friends and social life’) and talked about special friendships they’d had for years. People with teaching assistants worried that they would get in the way of their friends but this wasn’t the case. Teaching assistants were sensitive and didn’t hover about too closely when people where with their friends.
 
Some people didn’t have a problem telling others that they had arthritis but others wanted to keep it a secret or tell only their closest friends.  People worried what others would think and didn’t want to be treated differently (see ‘Friends and social life’).
Sometimes people had difficulties making or keeping friends. Some of the people who had to take a lot of time off school felt they grew apart from their social group and had difficulties becoming close friends again. They had to work hard to catch up with work but spent less time socialising. People with mobility difficulties struggled to do certain things with friends like PE or going shops with friends. When others went out to play and run around people with arthritis sometimes had to stay indoors or sit down. This could make people feel “lonely” and “self-conscious”. Deni wasn’t allowed to join a group project at university because people felt she was “unreliable”.
 
Some of the people we spoke to had experienced bullying. People were sometimes accused of “faking” symptoms or “attention seeking”. They had been called names and were occasionally physically bullied too. Sometimes people had to change schools because of persistent bullying.
See our 'Depression and low mood' section for more about experiences of bullying and depression.
 
Fatigue, work and sleep
Sometimes the people we spoke to struggled to stay focused and awake in class. Some felt that this was because of the medication they took, but others said the fatigue was caused by arthritis itself. David Z found it hard to cope when he had a full day of lectures at university. When Cat and Zoe where in primary school they were allowed to take naps during school time if they were having a flare up. People talked about accidentally falling asleep at university or on the bus home. Sometimes they napped when they got home before they started their homework but didn’t nap for too long otherwise they’d be awake all night (see ‘Fatigue, sleep and energy levels). David Y found that it took him longer to finish his homework if he had a nap before he started.
 
Missing school
Sometimes people missed school during a flare up or if they had hospital appointments to attend. Although some people didn’t mind missing school others felt frustrated if it affected their grades. People sometimes took school work with them to hospital appointments so they could catch up whilst waiting for an appointment. If they had to stay at home during a flare up they could ask for work too and some had been home schooled, but some found the level too basic. People who spent a long time in hospital went to a hospital school. Sometimes people felt tempted to take a “sneaky sick day” or pretend not to be able to do their homework. Occasionally people got out of PE by saying they were sore even though they felt OK. Tom tried not to miss PE because he wanted to stay active and some people were genuinely unable to do PE because of a flare up.
Medications
If people had to take medication during the school day they could do it in a private space or get help from the school nurse. Jessica struggled to inject herself if her hands were bad so a school nurse was taught how to do it. Jessica didn’t like people seeing her inject herself so she went to a medical bay to do it. When Tom went on a school trip he noticed many other students taking medication. He said, “You realise no one’s completely healthy all the time”. Bradley was usually sick after taking methotrexate. During his GCSEs he avoided taking the medication on the days he had exams (see ‘DMARDs’).
 
People are not supposed to drink alcohol when taking certain medications. Some people felt out of place at university when their friends were drinking and they couldn’t. Others joined in the drinking games but drank soft drinks, ate chocolate or nominated friends to drink on their behalf. It could be easier when people started their second or third years at university when some students do more work and less drinking (see ‘Friends and social life’).
 
Lack of support
Schools and universities had differing levels of understanding, willingness and support available for young people with arthritis. Often young people and parents felt that schools and teachers were supportive and tried hard to help out as much as they could. However, sometimes people struggled to get the help they needed.
 
Michelle’s school lift was too small for her wheelchair so she had to struggle up the stairs. Sometimes people were told to sit out of a PE lesson like trampolining if the teacher thought it was too dangerous. Jazmin was given extra printer credits from her university so she could print out the lecturer’s notes but wasn’t offered a printer so had to walk to the library. Cat received Disabled Student Allowance but this couldn’t be used to fix her car so she had to walk to her university placement.
Sometimes people had problems with teachers lacking understanding and awareness of arthritis. Some young people were accused of faking their symptoms. Health professionals and parents could make things better by contacting the school to make staff aware. Beth tried explaining things herself but felt that some teachers didn’t listen. Deni kept her arthritis a secret until her hand swelled up in an exam. She got shouted at for not telling the school sooner. When Chantelle was off school her teachers didn’t send her work even though her mum kept chasing them up. Michelle didn’t feel her tutors were sympathetic when she couldn’t make it to college during a flare up.
Some parents had to fight to get their child a Statement of Special Educational Needs (or “Statement”). Statements describe an individual’s needs and how they should be met. Statements are often used to get extra help, such as support from a teaching assistant or equipment like a laptop. Not everyone with special educational needs or disabilities will need a statement because schools can often provide students with the support they need.
 
The young people we spoke to were often proud of their academic achievements – particularly since they did so well with arthritis. Some had taken weeks or months off from study but still did well. Others had to drop out of courses and try again the following year when they felt better.


Last reviewed August 2015.

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