Arthritis (young people)
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.
Jazmin has a positive attitude to life and feels there are worse things than having arthritis.
Jazmin has a positive attitude to life and feels there are worse things than having arthritis.
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.
There were lots of things going on in Deni’s life when she was 16 and she ran away from home.
There were lots of things going on in Deni’s life when she was 16 and she ran away from home.
Sarah was in denial about having arthritis. She refused to take medication and made life difficult for her parents.
Sarah was in denial about having arthritis. She refused to take medication and made life difficult for her parents.
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.
Lu had 'really big insecurities' growing up. Arthritis affected the appearance of her joints whilst medications caused weight gain and hair loss.
Lu had 'really big insecurities' growing up. Arthritis affected the appearance of her joints whilst medications caused weight gain and hair loss.
Caitriona was not happy with her body image.
Caitriona was not happy with her body image.
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.
Deni felt shame because she 'can't do things that other people can do', such as shopping and cleaning the house.
Deni felt shame because she 'can't do things that other people can do', such as shopping and cleaning the house.
Well, you can’t do things that other people can do. Even just like making a cup of tea or lifting the kettle or boiling potatoes like hot or having to do all the housework. Normally, I would be able to get all my housework done in a day and now I have to pace it over four or five days because I can only do one task at a time, like hoovering or lifting the washing in and out and shopping. I can’t carry bags in my hands any more. I have to rest it on my arms, which is then starting to put strain on my elbows, which is now, and, you know, and then the shoulders and they’re both joints that can potentially be affected. So I worry about the way things are changing and how I’m going to have, you know, it’s shameful. It is shameful because you can’t do it for yourself.
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.
Having to live with pain on top of normal teenage pressures such as exams made Elizabeth feel 'depressed'.
Having to live with pain on top of normal teenage pressures such as exams made Elizabeth feel 'depressed'.
Arthritis affected David Z's emotions differently over time. During a flare up he would get 'depressed' but felt more 'optimistic' when the flare was over.
Arthritis affected David Z's emotions differently over time. During a flare up he would get 'depressed' but felt more 'optimistic' when the flare was over.
Yeah, a huge side. I mean there’s so many aspects. There’s the emotional response you have to being first diagnosed. That can be quite acute, quite intense for a short period of time. And I think it’s really important to have support around you whether it be friends or family because trying to do it on your own is at first really difficult, but there’s no need for it because it doesn’t make you any stronger. Having done it by yourself, it just means that you’ve had to go through a lot of suffering, well, more suffering than you’d have needed to for no reason. So I think having that support around you, whether it be, not only family but having really good relationship with your doctors about any concerns you have is really good. There are time that if I’m going through a good time, so there’s not much pain, there’s, you know, coming out of a flare, I usually am quite positive, quite optimistic about the future. But then, if I go through a flare or, you know, something, you know, something that increases the amount of pain I have, quite quickly that can be completely reversed. I can become quite depressed, quite I have a quite short term view and think, quite a short term view in thinking, you know, “I can’t live like this. I can’t cope like this.” But it’s a knock on effect because if you have pain, you know that your work is going to suffer. You start panicking about work. You start panicking that you can’t do as much with friends. So it’s a complete knock on effect and I think it’s really important to have a think through what the pain has in terms in affecting your life before like the emotions run through.
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’).
Charlotte Z didn't want to die but she didn't want to live with the pain either. She felt 'miserable and sad all the time' until she found help.
Charlotte Z didn't want to die but she didn't want to live with the pain either. She felt 'miserable and sad all the time' until she found help.
I wanted to kill myself, I didn’t want to be dead but I didn’t want to be here in pain, so yeah. And I was just, this is going to sound really horrible but I like, I, at times and I know other people with Arthritis have said this but at times we wish we had a different illness that can either be cured or kills you, because you’re living in pain your whole life and yeah, that just seems, I was just like “Why?” “Why me?” But now I look back and think like I don’t think in that way at all anymore. And yeah it was quite as; I was probably quite horrible to live with because I was just so miserable and sad all the time. And I just, I’d got to the point where I didn’t know what it felt like to be happy. I forgot, I was starting to forget what it felt like to be happy and was starting to, but I didn’t know what it was like not to be in pain anymore. And then I was losing my like happiness as well. So yeah. But and the psychologist helped with that and then it was my Occupational Therapist who actually explained like the whole grief cycle, and then I’ve kind of just started to get to the point like this isn’t you, you’ve got to do something about it. You’ve got the diagnosis now, which is the hardest part you’ve got an illness, you’ve got to live with it. Yeah. So make the best out of the bad situation.
After Chantelle attempted to commit suicide she was referred to CAMHS (Child and Adolescent Mental Health Services) where she was helped to express her thoughts and feelings using drawings.
After Chantelle attempted to commit suicide she was referred to CAMHS (Child and Adolescent Mental Health Services) where she was helped to express her thoughts and feelings using drawings.
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.
Deni refused treatment and did not see a rheumatologist for eight years. She said that she has always associated hospitals with 'negative thoughts'.
Deni refused treatment and did not see a rheumatologist for eight years. She said that she has always associated hospitals with 'negative thoughts'.
Well, my earliest memory of a hospital was, like I said, I remember being on this bed thing with these people looking at me I don’t know that, I’ve got that and I remember also like to the left of me there was a little boy, because I was on a ward, and his name was [name] and he was really sick and he died but he was like my friend like at the time and to this day, I’ve never ever forgotten about that wee boy because I used to put like little pockets up because he was in this like plastic thing that had holes in it. I think it must have been like an incubator type thing but he was older than me and he was smaller than me. He looked like a baby and I used to put puppets up and try and make him laugh and things and I remember him and he was there and then he wasn’t there and that was really weird at the time. Like to this day I use his name for everything, passwords, all my dolls were called [name], my first pets were called [name]. I don’t know, I’ve always remember that wee boy and it kind of scared me because of this big plastic thing and these people looking at me. That was the first kind of thing I had and then there was other occasions when there was a trainee nurse, I think I was about five, six and the doctor asked if she could take my blood and she put the needle through my arm. She done it wrong and she broke my like she burst my vein and oh, it was awful and my mum was so mad at me for screaming and saying, “You’re making a scene. Will you be quiet?” And dragged me out and there I am blood pouring everywhere. This woman has just hurt me and I’m like, “I’m the one that’s, you know, been hurt here and I’m the one that’s getting into trouble.” So I think just I’ve always associated being in hospital and being sick with negative thoughts and me doing something wrong, me not behaving properly and, you know, there being something wrong with me and I don’t want to feel like that, so I just don’t go.
Teresa's daughter, Elly, had an 'absolute fear' of medication and used to fight, scream and run away when it was time for her injections.
Teresa's daughter, Elly, had an 'absolute fear' of medication and used to fight, scream and run away when it was time for her injections.
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 'Family').
Marie had a phobia of hospitals and used to have panic attacks when she went to her son's clinic. After behavioural therapy she feels calmer in hospitals.
Marie had a phobia of hospitals and used to have panic attacks when she went to her son's clinic. After behavioural therapy she feels calmer in hospitals.
No I had to go to behavioural therapy because I don’t go to hospitals. I basically wouldn’t go to hospital for anything so because Ryan had to go to hospital all the time, I was on panic attacks and they were getting worse and worse but I had to go because I have to get Ryan seen to and I’ve; I don’t know why but it’s probably something to do with me being a child but whatever reason, I just have panic attacks going to hospital. So I had to go through steps to get, to get into hospital because I could, if, friend used to, Ryan’s seen me freaking out walking into the hospital but I was just having a panic attack and him seeing that wasn’t helping him be comfortable going to hospital. So I went to, it’s called behavioural therapy, so they like try and change your behaviour and your thoughts so you don’t panic and so on whatever. When, now four years on I’m doing pretty well. So I don’t go anymore but I can actually walk in a hospital now where before I’d walk in a hospital, straight to the toilet, try and calm down and then come back out again, sit somewhere for five and then off again. I couldn’t actually stay still and when I’ve got to wait, when it’s got to be Ryan, you know, I’ve got, with me I can choose to walk in and out and not get treated but with Ryan I couldn’t choose that so I had to stay, I had to get through my panic attacks and stuff like that with it but….it worked and I can do the hospitals now with him and he doesn’t see me panicking which then helps him be more calmer about going.
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.
Catherine sometimes panics about the future. She wonders if she will need a walking stick or a hip replacement.
Catherine sometimes panics about the future. She wonders if she will need a walking stick or a hip replacement.
I’d say there definitely is yeah because especially as you get older you start to think more like ooh, like I always think what am I going to be like in another, if I’m like this now what am I going to be like in another twenty years. Am I going to be like round on a walking stick or needing a hip replacement or something so there’s always like panics about the future I think and when I was younger I never really, I never worried about the future at all and I think there was always the option as well that I’d grow out of like, grow out of arthritis which obviously didn’t happen. So I think yeah there’s a definitely, there’s the stress as well of thinking, “Oh god if this is going to get any worse, am I going to have to take time off work,” and “What’s going to happen like say when I’m older?” and things so, there’s always those worries.
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: November 2018.
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