Arthritis

Emotional challenges

When people live with a long-term condition it’s not just the physical symptoms that affect them. People sometimes have emotional difficulties too. In this section young people with arthritis talk about their emotional challenges. They describe how they feel about their arthritis, the kind of things that could get them down and their thoughts about the future.
 
It’s important to remember that young people diagnosed and treated today usually have a very good outlook and quality of life. Some of the people we spoke to had been diagnosed a long time ago when they didn’t have access to all the treatments that people do today.
 
To read all about the things young people did to make themselves feel better see ‘Coping with emotions’.
 
Feeling positive or indifferent
The people we interviewed experienced a range of different feelings about living with arthritis. These feelings sometimes changed over time. You can read more about people’s initial feelings here (‘Hearing the diagnosis’).
 
Sometimes people felt indifferent towards arthritis. They said that arthritis didn’t change them as people. For example, Bradley said, “It don’t make me feel good or bad it just makes me feel the same person. I’m no different”. Others, such as Jazmin, had a positive outlook on life.
In different sections of this website people talk about various positive aspects of life. For example, people describe their educational achievements (see ‘School, college, and university’), their social lives (see ‘Friends and social life’) and having intimate relationships (see ‘Relationships, dating, sex and pregnancy’).
 
However, sometimes living with arthritis could have a negative impact on people’s emotions for different reasons. People talked to us about a range of topics such as denial, body confidence, getting around (mobility), pain, depression, diagnosis and treatment, loneliness, friendship and relationships, family troubles and fear of the future.
 
Denial and avoidance
Some of the people we talked to said they were 'in denial' about having arthritis. They deliberately avoided thinking about or talking about arthritis and kept their condition from friends. Sometimes people avoided treatment altogether.
Body confidence
People sometimes felt unhappy with the way they looked and worried what other people would think about them. They talked about not being as tall or as slim as they would like. Some of the people we spoke to took steroid tablets (though it’s uncommon nowadays for young people with arthritis to take steroid tablets because of major advances in other treatments – see 'DMARDs' and 'Biological therapies'). Steroid tablets may slow down young people’s growth or cause them to put on weight in a short space of time. Some said they had lost unwanted weight when they stopped taking steroid tablets. You should always seek medical advice from your doctor before you stop taking any prescribed medication.
 
Some people disliked certain parts of their body and kept them covered up. They talked about having swollen knees and ankles, nodules on wrists, bunions on toes or disfigured hands and feet. Dan was very conscious of his arms because he struggled to straighten them. He never wore short-sleeved shirts. Finding clothes that fit could also be a problem. People talked about wearing different sized shoes on each foot or shopping in adult shops and having the clothes taken up.
Getting around
Sometimes people said they felt self-conscious about the way they moved. This was because they felt that they walked too slowly or didn’t like people seeing them using a mobility aid like a walking stick. Sonia felt “embarrassed” because she sometimes had to crawl to open the door for visitors in halls of residence. People also talked about feeling frustrated when arthritis pain or fatigue prevented them from doing something like going shopping, cooking food or seeing friends.
Pain and depression
The people we talked to sometimes said that pain influenced their mood. Pain could cause people to become upset. Joseph used to wake up at night crying in pain. Sometimes pain made people feel low or depressed. Doctors diagnosed and treated some for clinical depression (see ‘Coping with emotions’). People who felt depressed or anxious would be up at night worrying. Pain could also stop people from sleeping. Kerrie said that feeling “stressed” and “low” made her pain and fatigue worse. People talked about being emotionally tired if they were physically tired from the pain (see ‘Fatigue, energy levels and sleep’. Sometimes people drank alcohol to try and make themselves feel better.
Very occasionally people we spoke with said they had experienced suicidal thoughts. They didn’t necessarily want to die but had thoughts about death because they were in so much pain. We also spoke to two people who had tried to commit suicide. Both got help from family members and professionals who supported them through difficult times (see ‘Coping with emotions’).
See also 'Young people's experiences of depression and low mood' and 'mental health resources' for links to support websites and helplines.
 
Diagnosis and treatment
Sometimes people said that they were upset when they were first told that they had arthritis (see 'Hearing the diagnosis').  Some also found consultations and treatment difficult. For example, some had a phobia of needles. People talked about not coming home from school when they were supposed to have an injection, running away from or fighting parents, doctors and nurses who tried to give injections, or getting angry at people who gave them injections. Ryan was nervous when people he didn’t know tried to inject him or take a blood sample. Charlotte X was angry at her mum for siding with doctors who prescribed an injection she didn’t want, and Rebecca was frustrated at a doctor who didn’t find effective treatment fast enough. Some people developed a phobia of tablets. Others developed a phobia of the colour yellow because methotrexate was yellow. People with this phobia couldn’t swallow yellow food or yellow tablets ('DMARDs'). Deni developed a phobia of hospitals and didn’t want to admit to herself that she had arthritis. She refused to take prescribed medication for 8 years. She also stopped visiting the hospital.
Loneliness, friends and relationships
Sometimes people felt that living with arthritis could be lonely. Some also felt that it was difficult for people without arthritis to understand what it was like to live in pain. Others said it was hard to find a girlfriend or boyfriend because of the arthritis. For example, Dan said he sometimes struggles to find friends or a girlfriend because he's in a wheelchair. He said people “see the wheelchair” before they see him. Some had difficulties telling boyfriends and girlfriends that they had arthritis because they worried what their partner would think. Gemma said she felt “alone” when her friends went out and she had to stay in because of her arthritis. Deni left home as a teenager and found it lonely living by herself. Kerrie felt lonely when she first developed arthritis because she lived away from her family. Sometimes people said that they used to have bubbly personalities and good social lives, but this changed when they first got arthritis and they spent more time indoors (see more on 'Friends and social life' and 'Relationships, dating, sex and pregnancy').

Family
Family members sometimes bore the brunt of young peoples’ emotions. For example, Zoe used to get “aggressive” towards people who touched her or offered to help her when she was in pain. Rebecca used to get into arguments with her sister when she was in a bad mood.
 
Parents also struggled emotionally and worried for their children’s health. One mum had a history of clinical depression and self-harm. She worried lots about her daughter’s arthritis. Her daughter was angry with her for lots of reasons, causing arguments and tension at home. Sometimes parents had to try to manage their own anxieties for the benefit of their children (see 'Families').
Concerns for the future
Sometimes people were afraid of how their arthritis would affect them in the long run. Some worried about the damage arthritis could cause and if this would affect things like their appearance or mobility. They worried about needing surgery in the future or growing old too fast. People were also concerned about the impact of arthritis on being able to do university courses or having a career.
Not everyone who lives with arthritis struggles emotionally but a lot of help is available for those that do struggle (see 'Coping with emotions').

Last reviewed August 2015.

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