“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.
At the time of the interview Sonia was a full-time university student. She is white British.
So yeah I think I probably like a side benefit of the injections that I wasn’t expecting is that because it means that I’m not having to think about the pain all the time and not having to think about I need to do these exercises, well I probably should be doing my exercises actually but still, but not having to worry about, not having to worry about not turning up to things. Being able to plan in advance was really good but yeah the thing is being able to see things with some distance, and look back on how it was at the time, before I had the injections. And see how I was reacting, whereas at the time if you’d asked me if I was really angry I probably would have gone, “Nah.” Or I would have just; I don’t know I probably wouldn’t have wanted to talk about it at all. I probably would have just brushed it under the carpet, but now that I have a break from the disease as it were, I can sort of re-examine how I felt at the time.
So it provided a, an opportunity to reflect?
I’ve never heard somebody talking about medication doing that before which is…
Well because it takes…
It makes sense.
Everything away like I very rarely have stiffness, okay so I still can’t stand for long periods of time, and I have to make sure I’m, when I’m doing exams I probably still need to stretch between exams and that kind of thing, and as long as I’m moving all the time then it’s you know it’s pretty much okay.
But it, I don’t have the pain anymore, touch wood, I don’t have the pain anymore and I don’t have the anger that comes with that, I’m more confident, I’m less conscious of like when I’m walking in the street, and more active which probably helps, you know because I’m not in pain all the time and it seems like the most counter-intuitive thing to do exercise when you are in pain ‘cos all you want to do is lie in bed and not do anything, and I never believed them when they told me you need to do it, you know, that’s like that’s so, but now I do a lot more exercise and walking places that I’m just enjoying being normal I think. And it does, it is like a, this extended breathing space to just think about, you can just think about well that was how I was then, I was really angry at the time. Yeah.
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.
Chantelle is a full-time school student. She is engaged to be married. She has no children and is white British.
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.
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”.
I did actually request to see one, it wasn’t offered to me, which I thought was bad, you know considering I was in hospital for a year, you know, and I mean another person would’ve gone mad. You know and I’m not saying I didn’t have my bad days but I just learnt to deal with each day. But I did request to speak to someone because it’s good because it’s someone from the outside, you know it’s a totally fresh pair of ears, it’s a totally neutral person, it’s not a family member, it’s not a friend, they’re coming from it from an entirely different angle, and they can see it from a different perspective.
So I’ve really helped me deal with it, you know so what’s changing, and in a way you know it helped me deal with the massive changes in my life. You know from walking, I wasn’t, but you know I could walk a little bit, but that taken away from me is a huge change. But it helped me to deal with that, see it from a different perspective. You know and ways to deal with it. So this is when, I mean I’ve always been positive but learning to accept things instead of fighting against them. You’re never going to beat it. You know the only way you can do is accept it in order you know, you know you’ve got to embrace it, you can’t reject it. You know otherwise you’re gonna lose, does that make sense?
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.
At the time of the interview Sonia was a full-time university student. She is white British.
They taught me a lot of techniques, we had to try and break out of, ‘cos you sort of spiral into it, and you’re trying to get out and you can’t because you’ve gone too far in, and it is sometimes really hard to, because for example when I had that, you know during the exam term and I was spiralling in and in and in and in, it’s so hard to think that there’s a light at the end of the tunnel, because you’re so far down that you think there’s no way out, and it’s just going to be like that forever.
So there’s one they always teach you which is you’re presenting to the jury and the judge, and you’ve got the situation, and you’ve got your slant on the situation and you’ve got the extreme opposite slant. So just say for example that person over there was laughing at you, and that’s what you think, and the opposite was that they’re laughing at somebody else, and then you have to present evidence in your head for both cases, and come up with what the jury would probably think at the end. And that’s what you have to hold onto, that mix of the two. It might not be the most positive statement in the world, well they could have been laughing at me, but they probably weren’t, so that’s the kind of, it’s not completely they definitely weren’t laughing at you because they could have been, but it’s kind of finding that happy medium I think.
Does that work?
Sometimes. Like it’s difficult with pain because when you’re in pain it’s hard to compare it to something else, and be like, “Well they’re people who are in far more pain.” “It can’t be, it can’t be possible.” You know, you know even though people are telling you, “Well there’s kids in Africa who are starving,” and you see pictures of this, and then, but then you just feel guilty about even being in pain, so it probably is quite difficult with that kind of, it’s more abstract, there’s not like a person to blame it on, that kind of thing, yeah.
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.
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.
Chantelle is a full-time school student. She is engaged to be married. She has no children and is white British.
What’s a tapping method?
It was, I’d say all the bad things that they’d said to me, but tapping each finger there, it would be with your different like there and there and there, and all your hands and you’d do your shoulders and you’d say all the bad things. And then you’d let them go off in a balloon but it wouldn’t be a real balloon, it’d be in your mind and it would just, once you’ve just sat there and you’re in the mode it’s really, you actually believe as if it’s happening.
And then the second one she did with me I’d lie down, and she’d put some like, well me I was pretending I was on a beach in ‘Costa Brava where I went with my brother, and what we did then, she’d put the music on and I’d be going into the beach and it would open up like a piece of paper and I’d be going into all the bad times of what’s happened at school. And then we would be pulling them out like weeds, and then as we’d pull them out they’re being binned. And then we had to set them on fire so they burnt away and it was just made ‘cos I was asleep, I wasn’t asleep but I was in hypnosis like deep in thought and she was helping re-sort my mind out. And that went to the back, she was putting that at the back of my mind and as she brought me forward, really to my own forest I come out at the beach at the end. So at the beginning you begin with the beach, going into your bad thoughts and you end with the beach. And then she brings you forward and you just open up with a smile then because she puts them to the back of your mind. And she sort of like, I don’t know it just done something to my mind, yeah it had happened, I’d come out, yes I’d been bullied but I didn’t feel, I didn’t feel depressed about it anymore. I felt like, “Oh I wanna go shopping,” instead of, “Oh I actually don’t wanna go out. What if someone looks at me? What if someone says something?” I actually wanted to go shopping. Yeah.
That’s remarkable wow. Wow thank you for that. So you came out, you were smiling and do you, did you feel better?
Yeah it just made me feel happy. And my mum and the whole house the mood changed. My brother, when my brother was living here as well everyone just felt happier because when I was going down through depression the whole house went sort of low as well, ‘cos I was the baby of the house obviously. I was normally the one that brought the life into the house and when I was down everyone was like down too with me. So when I was happy again everyone was sort of, the house went back to normal.
Okay then and you talked about a CD?
Yeah. This one’s called the rain forest, it’s a relaxation CD. I put it on at night or in the day, whenever I feel, and it just relaxes you and it recharges your mind. I do it on stressful days, you put on and it just relaxes your mind and I normally do it before I go to sleep ‘cos I have trouble sleeping if everything’s on my mind. So I put it on and it, if you want to wake up it will say to wake up, but if not it just tells you to drift off into your sleep which I normally do. But it just relaxes your mind and it takes the pressure off. It just stops it all from building up again; it keeps it empty in a way.
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.
Charlotte is a Quality Team Member. She is married and plans to have children in the future. She is white British.
My GP was fantastic. I went to see him quite regularly. Depression does run in my family as well so I got the aspect of probably I'm more likely to have it than other people but the arthritis is probably what causes it because it's quite a stressful thing to deal with. No the GP was very good, he listened, didn't make me feel like I was in the wrong or anything, quite supportive, talked me through options of going on tablets or counselling, things like that. Due to the nature of the counselling we kind of like discussed at the time probably wouldn't be a benefit.
Probably now it would be better than the tablets but I suppose it's up to me to go back to the GP rather than the GP to call me in. But no he's been really good. I know that when I've tried to come off the medication in the past he's been there to talk me through it and I did come off it at one point. I went downhill, wanted to walk out in front of a car, wanted to drown myself in the bath, things like that. I've had quite major effects of trying to come off it so he was quite easy to talk to about things like that as well which helped. So no I can't really fault how they dealt with that side of things. I'd say possibly the rheumatologist… necessarily the fact that the arthritis can lead on to cause things like that but from the aspect of the GP which has dealt with it is good. But I think possibly the problem there is the fact that they don't communicate to one another so the rheumatologist doesn't necessarily know the things you discuss with your GP and whilst I might mention it to the rheumatologist I won't necessarily say everything I've said to the doctor. And whilst there's a confidentiality thing I think that departments and things need to communicate a bit more.
Age at interview:
Age at diagnosis:
Charlotte is a student at college studying a BTEC in Forensic Sciences. She is white British.
I’d been to the Occupational Therapist who explained the whole grief cycle. And she, in, within that she said, “You’re not weak if you feel that way.” And that’s how I felt, I felt weak if I told people. And then just by her I realised she was right. So I was able to like to say, “Okay I need help.” I don’t want to feel like, I didn’t want to feel like this anymore but I didn’t know how to not feel like it. So then by accepting that, reaching the bottom I was able to then come back up again. And then I started I just wanted to help, I didn’t want other people to feel like that so I found ways in helping other people, and then that’s, that’s just bought a lot of positivity as well.
And so it helps you feel good about yourself if you can help others?
I didn’t think that I had the right to feel sad and upset when there was other people going, like other people in the world that were dying and ill, and I felt guilty that I felt like sad that I had this illness, but then I realised well, its, I’ve never had any problems in my life so this to me is quite, is a problem. So I was able to accept that everything and then through that I was able to accept that I actually had the disease and to live with it, move on because you have no control over the disease, but you have control over whether you learn to deal with it and move on and have, you can, you can, it’s your control whether it’s a good outcome or a bad outcome. So I wanted a good outcome from it so that’s where I’m heading.
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.
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.
Kerrie is a self-employed baker. She is white British.
The decision to move back here, was that for emotional support?
Yeah lots of reasons but mainly emotional support and physical support, you know, being able to actually get around and do things. It’s not easy when you’re on your own and living hundreds of miles away to do things like food shopping. And, you know, there is the post office, just little things that you don’t you take for granted, I suppose, that I wasn’t physically able to do at that time. And again, you know, it’s different between having a face to face conversation with somebody about issues that you’re going through when, you know, the hassles and worries that you’re facing as opposed to talking to someone who’s miles away on the phone, you know. It’s not quite the same thing. So a lot of different aspects that influenced my decision.
You used the word lonely.
Is it still lonely being here?
No, not any more. I think that loneliness is kind of dissipated since I’ve moved back here. I feel much more emotionally supported. I feel like almost like I’m back to myself again, even though perhaps nothing is ever going to be the same, but I feel more of myself again now because I feel more comfortable and more relaxed because I know that I’ve got that support network around me that will help me no matter what happens.
Age at interview:
Age at diagnosis:
Tom is an A-Level student preparing for university. He lives with his parents. He is white British.
Also I think being in the summer holidays made it worse for me. ‘‘Cos I mean in the summer holidays you don’t get to see your friends as much as you would, so you don’t see them every day. And I think I just felt alone, like I was just stuck inside ‘cos I couldn’t really move that well, and it was just really depressing. Even though my family did try and cheer me up a lot, which was great, we had some great experiences like we went to Germany. We took a wheelchair, managed to fit in the car, just about. We managed to break the wheelchair, like the foot plates fell off so I had that on my lap, and I was balancing both my feet on one of the footplates for one whole night whilst we were going down cobbled streets in Germany. So my sister liked pushing me, I was like a little pram for her, so she’d push me as fast as she could over the cobbled streets, so we’d go b,b,b,b,b,b. So that kind of made it a bit more fun, even though it was a little bit of abuse, but what’s life without a bit of fun.
With a bit of abuse?
Yeah, abuse is what makes you tough.
Does your family help you with kind of the emotional state and, a lot or was it in those early days that was particularly important?
I think I’m quite an independent person in that I’ll keep my emotions to myself a lot. So I think for me it was something I had to do. I couldn’t really go to help ‘cos I don’t know it just feels like giving into it me. I don’t like giving in at all. I never want to give in. So I always try and cope as long as I can on my own or just keep going and not moan and not whinge and not really ask for help unless it’s ultra-necessary. But they were there for me, it’s not that they didn’t care; they cared too much if anything. They’d always ask, “Are you okay?” I’m like, “Yes Mum, I’m fine. Leave me alone.” But they’re always; they’re always there for me.
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 Association (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”.
Caitriona is a full-time university student studying law and politics. She also volunteers for Arthritis Care. She is white Irish.
Well first of all I've learnt to be open about it. Don't hide it, it makes it worse. I am constantly joking about it. It makes it nasty but I find that the more you joke about the condition and the more you let your friends joke about the condition, your friends, your boyfriend, I mean people would disagree with me when I say it, but I always go, "Yeah, yeah I'm crippled today, don't talk to me, don't talk to me," and although people find that quite offensive, with my friends if they can see they; I mean they would never use that phrase but if they can see that I'm, you know, I'm having a bit of a, you know, giggle at myself and I'm able to have a joke about it they feel a bit more comfortable because, well I am, I mean I have been in a wheelchair at one stage, I have been on crutches at one stage and you know I do use a walking stick. Other people see you like that, your closest friends, your boyfriend, it's I mean, one day you're walking, you're dancing, you're out in the clubs, you're dancing, you're having a wee drink and the next day you're, I mean you're bad, you can barely walk. I find that I get very emotional when I'm really that bad and from having that the easiest way I find coping with it, first of all being up front about it and joking about the whole thing.
And although I don't feel like it's a joke at the time, even have a wee giggle with my friends where they can't poke fun of me, that makes, you know, it makes the world of difference at the end of the day and it shows that although I'm ill I'm still the same person so that's something. I mean people they don't agree again with the fact that I say joke about it and using your derogatory terms like, you know, like 'I'm crippled,' and things like that and it can be quite nasty saying it but if you're saying it in a loving and a joking environment it can be quite, I mean it can just, it’s like making fun of people with ginger hair, you may not do it in England but it's something that you know people always talk about. So it's at the same time you're not you, you're not distancing yourself with a condition, you're involving everybody else in it. I mean if they step over the line I'll say, "Here, you know, you've stepped over the line," but making it free for people to talk about so that people aren't thinking, you know, people aren't tiptoeing round you. They're thinking, 'Oh, you know, can I say this?' Everybody is able to talk about it and not go, "Oh no, no, no don't you mention that," making it something that everybody knows about which I mean can be a big step. It was a big step for me telling everybody about it but making it a conversation out of it people are able to talk about and that they won't feel bad about offending you. I've had it, I mean I got questions like, "Can you even have relationships with boys?," you know, "Can you even do, you know, things, can you do things in the bedroom, can you do this and that?" and you know although it sounds stupid, educating people about things like this is something that really needs to happen so at the same time you're publicising, you're actually making people more accepted of it and in that kind of environment you become more accepting of yourself and you feel more included.
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.
David is studying Economics at university. He is single and white British.
Do other people support you emotionally?
Yes, mainly my family. I don’t like to tell my friends about it, not that I’m embarrassed about it, but firstly, I don’t blame them for this, but I don’t think they really understand my condition such as I didn’t before I had to start researching it and things. I think for them, they just think I get a bit of pain sometimes, it’s nothing much but and also I don’t really to talk to them too much about it because, while they might be sympathetic, I don’t want to burden them with the obligation to help me and support me, you know. If they want to do, that’s fine, if they want to do so, but I don’t want to ask them for it because I know my family would do that if I wanted them to. But as I say, my family have been incredibly important and they’ve given me the kind of motivation to push through. I mean there were times where, you know, doctors weren’t listening and they gave me, you know, the support just to, you know, keep going and keep pushing because in the long term, it’ll be beneficial. So family have been absolutely fundamental to the fact that I am doing what I am today and I’m here today. Friends, not so much but that’s kind of my own decision, not theirs.
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.
Deni is a full-time university student and volunteer for Arthritis Care. She is white Scottish.
It was a big secret up until December last year. I mean I told my closest friends and that’s only because I trusted them enough to tell them. I’ve known them for a really long time. I’d met them at college so they were quite shocked to find out that all those years of partying, I was actually sick. I’m generally now I’m quite open about it. I mean, like I said, I didn’t tell anyone anything and then all of a sudden, I became the face of this direct mail campaign for Arthritis Care and that story is everywhere now and I’m doing a blog about living with arthritis.
So I’ve gone from being silent about it to being quite public about it. I’m not sure where the line is of how much I’m going to keep private and how much I don’t any more.
It’s all happening quite fast. New people, I think I kind of tell them that I’m a volunteer for Arthritis Care. If they ask me if I have arthritis I kind of say, yes, but I don’t go into huge detail, kind of direct them to the blog, that’s really about it. But my closest friends, I’ll talk in depth with them if they want to.
Okay. It’s a bit of a radical thing, isn’t it, to go from keeping it a secret to…
…telling the world?
I’m not really sure if it’s the best thing to be doing and then I remind myself that it is because if I can help one person, one young person, not end up being so scared and vulnerable and feeling so lonely and ashamed as I have, then that would be the best thing. It would make me feel a lot better.
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.
There’s a site that deals with lots of different things from like self-harm to sexual abuse to pregnancy. It’s called six billion secrets and I go on it like every day because it makes you feel a little bit better. It also shows that there are people out there that are worse than you and it’s all anonymous and you have like a little postcard shaped thing on the web and you have about four or five lines of writing or however many you want and you just have short sentences and it gives you quite a dramatic affect really. It’s like summat I was reading one recently about a woman or a girl who cuts because you don’t know the age. They’re all anonymous and she bought this cream to heal herself. She bought a bottle, which is supposed to last about a year or so and she used it up in three months. It shows the last line, because I remember this, it was like, “What have I done?” And it really gets through to you like there are people out there that that are scarred. I know they’ve done it to themselves but now they must regret it so bad and it just makes you feel what you can do to help them, not what other people can do to help you.
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