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.
Age at interview: 20
Sex: Female
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OK and in terms of this positive attitude you've got, where did that come from?
I don't know, like I think it comes from, you know, knowing what I've got, feeling like I'm in control and I have the power and that my parents don't feel it's like the end of the world. They like just, you know, just see me as me and just, accept me for who I am and it's really, it helps me a lot to know that my friends just see me as who I am and like, 'Oh what, what is it?' sort of thing. They just accept me for who I am and yeah I don't know where it comes from, it just happened.
I always have been happy and optimistic and like obviously just have my bad days like everyone else does. I just, I don't know, I think it's just my attitude to life really that thinking that, you know, there's worse things in life I would say that so I shouldn't just really concern myself about being upset all the time because it's not going to really get you anywhere if you're just down all the time or anything. I suppose it's just my attitude to life that makes me this optimistic I suppose really.
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.
Age at interview: 26
Sex: Female
Age at diagnosis: 2
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I think there was a whole manner of things that kind of built up. I was trying my best to get through my exams and my hands swelled up like a balloon and I have one exam left and it was the most important one for me, it was my media studies and I’d already decided before I’d take these exams, that’s the way I wanted to go and my hand was like a balloon and I didn’t know what to do and I just kind of went and showed someone at the school office and everyone was fussing around me and, “Why didn’t you tell us sooner?” You know, “Why didn’t you tell us you had this condition?” And shouting at me about it and I was just kind of sitting there with this big hand going, “Well, I’ve told you now I guess.” My little brother didn’t really understand and we were sharing a room at the time and you know, I was sixteen and he was fifteen and this seemed a bit awkward that we were still sharing a room. Boys, friends not understanding what was going on and me not really understanding what was going on. I just had these bad tablets and the bad reaction and mum was really pushing me to go back to the hospital and, you know, I ran, I didn’t really think it through. I just ran.
How long were you gone for?
I haven’t ever been back home.
Okay.
I’m still in contact with my family and we have a very good relationship. I never fell out of contact with them but I’ve never returned home. I’ve always lived on my own since. So, ten years.
Have you changed as a person over those ten years?
Oh, yeah.
In what ways?
I’ve grown up a bit. I became very independent. I think when I lived at home, as much as I didn’t like having to do it, asking for help from my mum was okay. I could do that and she was always there but as I’ve lived on my own and got older, asking for help is a massive issue for me. I don’t like doing it. I don’t want to have to do it and it makes me feel like I’m failing if I have to ask for help.
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.
Age at interview: 22
Sex: Female
Age at diagnosis: 11
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When I was originally told, I didn’t actually understand. All I remember was my mum bursting into tears and getting very upset. Couldn’t understand why, at my age that I had something that, very commonly, gets mistaken for something that only older people have.
I didn’t know what was going on. I, to be honest, at that age, I didn’t actually care. I just wanted to get out and go and see my friends. That was all I wanted to do. When the medication started, I admit I made life very difficult for my parents. I went into a denial. I didn’t have anything wrong with me. I don’t have to take this. I don’t have to take medicine that’s going to make me feel sick. I’m just like anybody else and I did go through that stage for quite a long time.
It was a good year or so later that I eventually, accepted it and sort of behaved myself, because I did misbehave. I didn’t take the drugs I was given. I sort of messed around with it. I didn’t want to accept it.
It was also made difficult at school. I had just started high school and I couldn’t do PE or games. So, whenever I had PE or games lessons, I had to go and sit in another classroom with about six other children that had learning difficulties and so catch up on homework, and things like that, because I just physically could not do what they were doing. Which in itself was a constant reminder all the time. You know, why am I sitting here? Oh yeah, because I can’t do what they’re doing.
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.
Age at interview: 26
Sex: Female
Age at diagnosis: 13
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I definitely think the joint flare ups affect me because you know I remember having massive nodules on my wrists and I hated it, you know. If I’m on a flare up like I may not, I’ll just constantly wear jeans out because I don’t want anyone seeing my knees or my ankles or my swollen joints. So I’m, so I’m very aware of that you know. But everything else I guess, no, hair loss I had a lot of with methotrexate, so my hair got really thin.
But you know once you’re gonna, when you get better things like that are, you know like the hairs gonna grow back or you know you can get your weight back to how it was, it’s just a temporary sort of glitch. And the only long term thing is obviously, yeah I don’t like my fingers, you know I really don’t like all the joint damage or I don’t like my feet, but you know you’ve just got to get on with it I think, you really have.
But yeah I definitely, you have really, really big insecurities and I think it definitely knocked my confidence massively when I was you know growing up. And it took a long time to get me that back and that’s partly the reason I went travelling. ‘Cos when I went travelling I just wanted to, I went, my friends just, so I went, I went a someone else and came back as someone completely different with a lot more confidence. Because it’s just carefree, you don’t care what other people think, plus no-one knows your background or the history and I think that really helps.
Caitriona was not happy with her body image.
Caitriona was not happy with her body image.
Age at interview: 19
Sex: Female
Age at diagnosis: 13
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I'd like to say yes but I've been on the steroids three times now. You go on them, you come off them, you go on them, you come off them and I find; I mean now people will look at me and say, "Oh no you've got a lovely body," and things like that but I'm just not comfortable in myself at the same … because it's not me, it's not the way I'm used to being and I think one of the biggest effects arthritis can have and the medication can have is you kind of lose yourself in a sense. I lost, I've always, you know, been the small, well the tall skinny one who could eat everything and still be thin whereas now I'm kind of having to look at what I'm eating just to try and be careful because even if I do put on a bit of weight there's a certain point where if you put weight on it can be dangerous so it's trying to, I mean, and for a child that's awful. I couldn't eat the sweeties I, you know, I wanted to eat. I couldn't do anything you know, I wanted to do and I was constantly told you need to try and exercise, things like that and not exercise in the way you go out and play football with your friends. Like you exercise so it was just a bit, a bit daunting as well for a thirteen year old and even now, a nineteen year old being told, you know, you really need to have a look at this.
No I'm not comfortable with myself so I can't be intimate with anybody else and I find that's something that happens to everybody. You need to be confident and comfortable within yourself to be able to, you know, to do something with you know, with someone else and it's something, it's something that really does stick with me. Because, you know, I would love to get into a relationship and be intimate with someone but at the same time at the moment, you know, with the steroids and with the effects that all these drugs and my condition has had on my body, I'm not comfortable with myself and I mean, I mean I know that there are loads of people who have the same feeling it's just trying, once you're confident within yourself, you know, that will kind of show and it is, it is something that, that does stop me but at the same time, I mean I'll overcome it at some stage and people do overcome it, it's just one of those things that you've to try and deal with and manage so yeah.
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.
Age at interview: 26
Sex: Female
Age at diagnosis: 2
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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'.
Age at interview: 18
Sex: Female
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Is there an emotional component to arthritis?
Yeah you do get emotionally affected by it a lot. You do go into, sometimes into the state of depression just like, “Oh this isn’t going to get better,” ‘cos when you’re in physical pain all the time you’re just going to be depressed. And you’ve got school work on top of that, you know it’s a lot of stress for any normal teenager to go through GCSE’s and A’ levels, but doing that on top of having the stress of just being healthy you know that’s a lot of stress and I was going to like hospital appointments after hospital appointments, and then I had to catch up on all the work I missed, so I would just feel like, sometimes I was like “I don’t care. I just don’t care anymore.”
But yeah I just got through that and I mean there’s only so much schools can do. All they did with me was really at the end of the term they’d say, “Well what are your targets?” And I’d just be like, “I don’t know. Sit at the front of the class so I can see,” or “Get to the lessons on time.” And that was all they could do really. ‘Cos I didn’t have any special help ‘cos I wasn’t dyslexic or I didn’t have ADHD. So they had helpers for that, but I was just mainly on my own. But yeah you do get quite depressed sometimes. But then again you know you’re on medication as well sometimes and that can affect it as well, yeah.
When it comes to depression, have you ever been kind of diagnosed with depression?
No.
Is it that you feel depressed, you feel low?
You just feel depressed yeah. It’s, you have a short time period where you’re depressed and then you feel better. And you just, you know I could be depressed for a day and I’ll just wake up feeling much better. But I’ve never been diagnosed with it, no.
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.
Age at interview: 21
Sex: Male
Age at diagnosis: 21
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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.
Age at interview: 17
Sex: Female
Age at diagnosis: 16
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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.
Sonia thought about the best way of killing herself but felt 'too chicken at the time' to have gone through with it. She also felt guilty because this would have angered her sister.
Sonia thought about the best way of killing herself but felt 'too chicken at the time' to have gone through with it. She also felt guilty because this would have angered her sister.
Age at interview: 22
Sex: Female
Age at diagnosis: 20
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So did you actually attempt anything? Any self-harming?
No, I sort of, I don’t know if you’ve ever done it but if you search for how to commit suicide in Google it comes up with a whole list of sites, like oh this is, “100 ways to kill oneself,” and you click on it and it will say, “Oh you loser, why are you trying to commit suicide?” or whatever. There’s a lot of, there isn’t going to be a site which tells you what you need to do is turn this to Gas Mark 4 and then stick your head in the oven, or anything. There are lots of sites which will re-direct you to like a page of counselling or to a page where just abuse, like somebody’s like, so and I think I was probably too chicken at the time I think to have actually done anything because I felt so, I think the only thing I was considering was, obviously I had a lot of drugs in my room and I had boxes and boxes of tablets, and I was sitting there trying to work out how much I’d have to drink in order to swallow everything. I wasn’t sure I’d be able to do it.
I was like thinking, “Okay well I’ve got four cups, and a bottle and I’ll have to go and refill the bottle by which time I probably will have swallowed about this many tablets,” and I just, you know trying to calculate everything out, and I just didn’t see how it would work. I also felt a bit guilty, because I thought my sister would probably have been furious if I had tried to kill myself. And so I was sort of a bit stuck. I didn’t really know what to do. And that was why I was crying so much I think because I could see that I could do this, or I could carry on with what I was doing as I was at the minute, and I didn’t know, both ways, I would make my sister angry one way, or I’d make myself upset the other way. And I didn’t know what to do.
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.
Age at interview: 16
Sex: Female
Age at diagnosis: 11
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But I got referred to CAMHs. And they were really good ‘cos they, the lady I had was really fantastic. She talked me through, we went through how I felt and I was there for a number of weeks, every week going there, every Monday or every Wednesday. And just talking through and she rang my school, told them. My school was fully aware and very helpful. It was on an upset day, I still went in but I didn’t have to do the lessons like that would stress me out and get me angry or feel even more like crying. And if I felt like I needed to cry my TA was there and I could just cry and let it out. But it was very hard.
‘Cos the lady that I had the second time was more private and confidential to me, she didn’t tell my mum everything I said and she was more like down to my age like, and she knew how I felt ‘cos she has been there and done it herself. And she had seen the bright side of it. She was telling me how she felt and I could connect with her much more better and she could tell me and help me overcome it, and she was telling me, it was just like being in a hole with a ladder and you’ve gotta climb up it slowly, step by step. And she give me sheets for each day, write down how I felt and we just done strategies and it just, eventually it worked.
And I guess do you remember what those strategies were? And can you talk about those?
Yeah. One of them was ‘cos I was quite an arty person instead of wordy, I would draw a picture and I would draw how it made me felt that day. And then we would shred ‘em after. And it just, once I’d shredded them she said, “That’s gone now. That’s done.” And it actually made me feel happier. And then she’d also did one that I told her, and then she also, she sort of, she also advised me to tell the people who was upsetting me, tell ‘em and that was my biggest, ‘cos I didn’t have the confidence to walk up to them and say, “Hey, do you know that’s really upsetting me. Can you stop that?”
And I actually rang up that friend who, and I told her, “Do you realise,” and then she realised and she sort of changed. She said sorry and we, we’re not friends but we don’t, she don’t upset me anymore the way she used to because I was able to get the confidence to say that. So it just helped me overcoming the situations and with school she come to the school with me and helped me tell the teachers what was going wrong and how I felt. And with my illness she just helped me to find ways, ‘cos I think it was more the medication had just changed from the methotrexate to the Enbrel and I was just even more lower, ‘cos I just, when you go onto new medications your body has to get used to it, and it took about six months for it to work in my system, so it was just, my arthritis obviously flaring up in that time. So it was just I was getting low, and she helped me to overcome the loneliness.
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'.
Age at interview: 26
Sex: Female
Age at diagnosis: 2
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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.
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She was awful. She turned into the most horrendous child. She knows that, she turned into the child from hell. I had to take her every week, for a blood test she had no problem with the blood test. Fine with the blood test, and an injection, the weekly injections. So by that stage she was probably about 11 or 12, and she would kick me, she would scream, she would hit me; you had to hold her down. It was a nightmare. It was a fight every time. And once at the hospital where she was meant to be having one done, I can’t remember why they were doing it there, or perhaps that was still blood tests in those days ‘cos she wouldn’t, she didn’t like either of those, actually. She ran off down corridors, we all had to go to find her. Absolute fear of the medication, and now she gives herself weekly injections, but she was absolutely terrified.
Wow.
Yeah. Nightmare. Awful. She turned into this like mad woman. She just, these eyes just went, it was nothing to do with the arthritis, it was the treatment. But that wasn’t anybody’s fault it was just the way she was. Actually they referred her to a, I’ve forgotten that they referred her to a hypnotherapist and all sorts. Psychiatrist at one point.
They actually saw her, did they?
They saw her, yeah.
Did they give her strategies, or things to do or?
I don’t know what they did. It didn’t work. Nothing worked. We saw the psychiatrist and Ellen could see straight through all those I’m afraid; she had the most ridiculous questions so she wouldn’t answer any of them. There was nothing wrong with her she was just being awful.
She mentioned that.
And she was scared actually.
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.
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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.
Age at interview: 24
Sex: Female
Age at diagnosis: 4
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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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