Arthritis

Coping with emotions

“When you live with arthritis, there will be times when you do need help and support from a range of different people. This may be emotionally, practically or both. There are many places and people offering help if you are in need of support” (Arthritis Care 2010).
 
In this section people talk about how they coped with emotional difficulties related to arthritis.
 
Effective arthritis treatment
Having effective treatment which controlled or reduced the symptoms of arthritis made people feel better about themselves.
Mental health professionals
Young people and parents who experienced emotional difficulties sometimes received support from mental health professionals, such as psychologists, psychiatrists, counsellors, play therapists or hypnotherapists.
 
GPs could refer people to mental health professionals. Before they were referred people sometimes had to fill in a psychological assessment form. Charlotte Z filled in a form which asked her about her moods and whether she felt suicidal. David Y asked to see a psychologist during his year-long stay in hospital. People could also pay privately to see someone.
People sometimes felt great relief after speaking to a mental health professional. They could be open and honest and get things off their chest. Kyrun said he felt so much better once his feelings were “not locked inside anymore”. He saw his psychologist several times a week and built a trusting relationship. David Y liked the fact that his psychologist was “someone from the outside” and a “totally neutral person”. 
In addition to listening to people, mental health professionals could offer advice on things like coping with depression. Charlotte Z’s psychologist helped her understand that physically pacing herself was important. If she did too much in one day she would have a flare up and be in lots of pain. She would end up “bedridden” which made her “feel rubbish”. Sometimes people were given mental techniques to use if they felt down about themselves or interpreted the world negatively.
Some of the people we spoke to received therapy in order to overcome phobias of doctors, hospitals and treatment. Gemma saw a play therapist to help her overcome her fear of needles. She used to cook, play games and take part in arts and craft. During these activities the therapist would find ways to talk to her about her phobia. She was also given breathing exercises to help relax.
 
Some tried behaviour therapy or cognitive behavioural therapy (CBT) to help overcome phobias. These therapies are designed to help change how people think, feel and act when faced with a situation they are afraid of. Deni felt that CBT was not helping with her hospital phobia. Marie found behavioural therapy beneficial.
Hypnotherapy was sometimes used too.
Help from other professionals
Professionals who do not specialise in mental health may offer support too. The people we spoke to described how nurses, doctors and occupational therapists listened to them when they felt down, upset or angry. Sometimes they offered support such as finding them volunteering opportunities or giving them encouragement. If Chantelle was having a very bad day her teaching assistant would “let her cry it out”. GPs can prescribe anti-depressants and some of the people we spoke to found these helped. Others preferred not to take medication and tried to overcome their negative emotions through counselling.
We spoke to some people who were never offered any form of support (such as counselling or anti-depressants) to help cope with emotional struggles. They said that they would have liked to have spoken to somebody when they were younger but they no longer needed emotional support from trained professionals.
 
Family
Having physical and emotional support from members of the family was very important to some. People talked about lots of different ways that their family supported them. Family members could help by:
 
• Being someone to talk to 
• Offering reassurance and hugs 
• Putting things in perspective during a flare up 
• Contacting hospitals to organise earlier appointments or collecting medicine 
• Coming to appointments and asking questions 
• Providing financial support 
• Stopping people from feeling lonely 
• Offering physical support such as going to the post office or shops 
• Help with personal care such as getting in and out of the bath
 
Cat’s mum recognised that Cat was experiencing depression and this prompted Cat to see her GP for help. Caitriona’s mum “forced” Caitriona onto an Arthritis Care weekend away which was a big step toward Caitriona accepting her condition and feeling better about having arthritis.
Parents’ perspectives
The parents we talked to tried to appear calm and strong in front of their children. They listened, offered reassurance and gave lots of hugs when times were bad and sometimes asked for help if they (or their children) were struggling emotionally.
 
At first some parents were in denial about their children having arthritis. They pushed the diagnosis to the back of their minds and tried to avoid thinking about it.
 
Some parents wanted their children to grow up with as much independence as possible. Karen said that she did not want to “mollycoddle” her daughter, Jenna, in case this made her “soft”. Paul wanted his daughter, Elizabeth, to be confident around healthcare professionals and encouraged her to ask questions during her consultations.
 
Sometimes a healthcare professional provided emotional support for parents. Parents talked about psychologists offering behavioural therapy or friendly nurses who would listen when times were hard. Some parents contacted charities like Arthritis Care and the Children’s Chronic Arthritis Society (CCAA) for emotional support and information about arthritis. Sometimes parents went away with their children to camps or weekend events run by such charities. During these events parents could share information and experiences, talk to other parents and discover that they were not alone. One parent receiving long-term treatment for mental health problems said she started feeling worse speaking about her feelings to healthcare professionals. She said the experience was “psycho-toxic” and would have preferred to speak to other parents but didn’t know how to access their support.
 
Friends and relationships
Some of the people we spoke to relied on their friends for emotional support. Meeting up with friends when people felt down or in pain could help cheer them up. Having a laugh and even joking about arthritis was one way that friends could offer support. Sometimes people met up with friends if they were feeling down or in pain in order to make themselves feel better. This humour might appear offensive to some (e.g. when people with arthritis refer to themselves as “cripples”) but it was one way for people to cope emotionally with chronic pain and mobility difficulties. People with arthritis were sometimes reminded by friends that “life wasn’t over”. 
Having friends with arthritis sometimes brought added benefits. Some said that you can only understand what it is like to have arthritis if you have it yourself. People could moan properly about arthritis with others who had the condition. Sometimes people preferred to keep arthritis talk within one group of friends and everyday chatter with non-arthritis friends. People met others with arthritis through charity support groups or on the internet. Others did not have friends with arthritis but would have liked to meet others with the condition.
 
Some people did not like talking to friends about their arthritis and preferred to keep their emotions and experiences private.  Sometimes people felt that it was inappropriate to “burden” friends with talk about arthritis or negative feelings. Other people didn’t have many friends and found it difficult to leave the house and socialise because of pain and depression.
People with boyfriends/girlfriends were able to confide in them and rely on them for emotional and physical support. People also talked about splitting up with partners and some said they found it difficult to trust others because of it (for more about relationships see ’Relationships, dating, sex and pregnancy’).
 
Spreading awareness of arthritis and helping others
Helping others with arthritis made people feel better. Sometimes people volunteered for charities or hospitals in order to provide emotional support and share knowledge about how to live with the condition. People also used social media such as blogging, vlogging and tweeting to share their life experiences and spread awareness of the condition. You may like to see the video diaries made by young people with arthritis here: see Jessica’s video diary.
 
Hobbies, distractions and relaxation
Another way people picked themselves up was to do something they enjoyed. When people felt down they read books, watched TV, ate food, played on a games console, listened to music, played an instrument, wrote poetry and wrote in their diary, or danced. Lu went travelling to see the world and said she felt better when she was away. Dan had body confidence issues and got himself dragon tattoos on his arms. Chantelle’s psychologist gave her a relaxing CD to listen to when she wanted to go to sleep. Bradley and Charlotte Y learnt breathing exercises which helped keep them calm.
 
Thoughts about the future
Sometimes people tried to keep a positive attitude by reminding themselves that having arthritis did not mean that life was over.  People talked about there being “worse things in life”. David Z motivated himself at university by thinking that his pain was temporary and how he might regret it in the future if he gave up his dreams now.

Last reviewed August 2015.

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