Arthritis (young people)

When people are diagnosed they are told what condition they have and given treatment.  People are usually diagnosed with arthritis after various tests (see ‘Experiences of tests’).  It is usually a rheumatologist who diagnoses somebody with arthritis.  Other types of doctors (such as GPs) will suspect or suggest that somebody has arthritis before they refer them to a rheumatologist.
 

Relief 
The people we spoke to experienced different feelings when they were told they had arthritis. People were sometimes relieved because they had been living with the symptoms for a long time.  Some said they looked forward to treatment, particularly pain relief.  Others said the diagnosis proved that the symptoms were real and not made up.  People also talked about feeling relief because they were not diagnosed with cancer.

Not surprised
Sometimes people had expected to be told that they have arthritis.  David Z said that it was “inevitable” that the doctor would tell him that he had ankylosing spondylitis.  He had read about the condition on the internet and thought his symptoms matched.  Tina met a parent of a young boy with arthritis.  When she described the boy’s symptoms Tina knew that her daughter, Lucy, had arthritis too.

When people receive a diagnosis they will then be able to start treatment under the guidance of a rheumatologist (see section on Monitoring and treating arthritis).

Shock 
Arthritis diagnosis often came as a shock and people described how it came “out of the blue”.   People often thought that arthritis only affected only older people.  When Leigh was diagnosed he was so stunned that he could not take on board anything else the doctor said.  Paul was “shell shocked” when the doctor told his daughter she had arthritis.  He had no idea that young people could get the condition.  Jazmin described how even her grandparents were shocked when they heard she had arthritis.  People who knew a lot about arthritis did not expect the diagnosis.  Charlotte X’s mum had arthritis but she was still upset and confused when the doctor said her daughter had arthritis too.
 
Upset and scared 
Being told that you have arthritis can be a very emotional experience.  Charlotte X “burst out into tears” when the doctor told her that she had JIA.  Kyrun remembers his mum crying when they were told about the diagnosis and Zoe cried lots when her mum told her that she definitely had arthritis.  Zoe “didn’t want it to be true at all”.
Some people described having an image in their mind of an elderly person with very swollen joints and limited ability to get around (mobility). They worried about developing similar problems as they got older. Others worried that they might need a wheelchair or Zimmer frame for the rest of their lives.  Tom worried about his future.  He said his type of arthritis was not predictable.  Sabrina was worried that she would stop growing.
 
People may also be afraid of what others think about them.  David Z was worried that he may not be able to go out with his friends as often as he would like and that he “would be trapped doing nothing for the rest of my life”.  Charlotte X was upset when she was diagnosed and said “like a lot of people I don’t like being different”. She wanted to still fit in with her group at school. 

Sometimes people mistook arthritis for “a terminal” illness that was life-threatening.
Mixed feelings Some people had a mixture of feelings about their diagnosis. Even though Kerrie was relieved to have a diagnosis she also thought that it was scary that she would have arthritis for the rest of her life. She felt “alone” when her doctor asked her to try some medicine and come back after four months. Charlotte Z’s parents were shocked to learn that she had arthritis, but her dad was also pleased that the doctor finally knew the source of Charlotte Z’s pain. Stacey was devastated when she learned that her son, Bradley, had arthritis. At the same time she said that she had to move on “and deal with this”.
Denial and disbelief Others were in denial about their arthritis because they did not want to believe that they had the condition. Cat remembers nothing about her diagnosis even though she remembers what happened before and after she got the diagnosis. She says that she has repressed the memory.
Too young to remember Some people said that they were too young to worry about the diagnosis. Sabrina was not concerned when she was told she had arthritis. She said “I wasn’t even bothered because… I’ve got plenty of years of time in my life.” Information about arthritis People often felt confused and afraid because they were not given enough information or that the information had been too difficult to understand. Ryan said the doctor used “big words” that were “difficult to absorb”. It was very important for people to feel they had enough information and at a level they could understand. Paul said he felt “uninformed” when his daughter was first diagnosed and he went to Arthritis Care to have questions answered. Kyrun was given a book to help him learn about arthritis but it did not have information about his type of arthritis. Tom found the leaflets from the hospital “scary” because they were designed for older people and full of stories about surgery. Chantelle has learning difficulties and was given too much information to read from the hospital.
Parents and doctors can help young people learn about arthritis. Marie helped Ryan learn about arthritis by using simple words. When Tom was first diagnosed his doctor used a model of a knee joint to show him how joints work and what arthritis does to joints. It also helped when people felt that they could ask questions about the diagnosis. Some said doctors cleared up any confusions or misconceptions they had.
When people receive a diagnosis they will then be able to start treatment under the guidance of a rheumatologist (see section on 'Monitoring and treating arthritis'.)

Last reviewed November 2018.