Fatigue, pain, and loss of strength and mobility (ability to move around) are some of the effects of arthritis that make it harder for people with arthritis to live independently.
Some people may find that they need to allow extra time to move around the home to do things like answer the door or pick up the telephone. Strength and dexterity (ability to do tasks using the hands) can be issues when it comes to opening doors or windows, or doing jobs that involve carrying loads – like the washing or bringing in the shopping. People with arthritis may also find the fluctuating nature of their condition difficult to manage. On good days, managing alone may be easy. On bad days, you may find daily tasks tiring and painful, which can be frustrating.
The people we spoke to had varying levels of difficulty when it came to movement (mobility). Some experienced very few difficulties and enjoyed taking part in physical activities like football, dancing or playing on their Nintendo Wii. This happened when people went into remission (their symptoms went away) or when they received the right balance of treatments (see ‘Staying fit and healthy’ and sections on different medications). Sometimes mobility improved lots after surgery (see ‘Surgery’).
Can I ask if your thoughts and feelings about arthritis have changed over time then?
I think because with Brad it's, people don't know he's got it. We think that he's, he coped really well and thankfully, I touch wood as I say this, he hasn't had any flare-ups, it doesn't affect his life. He's walking, he's running, he's playing football twice a week, he's completely, I mean when we go, when he gets checked out, he's in remission so we just thank the methotrexate and we did use to talk about it, we did used to say, you know, if he said, "Well I've got a slight niggle in my foot, can you have a look," but now it, we don't even, it's just the norm, we don't sit, we don't really discuss it unless he has a flare-up. I mean he did have one about coming on for a year ago I think, his ankle, it was the knee actually I think and we had to go for a steroid injection. When we got there for the injection it had pretty much gone down. He has been put on prednisolone in the past and that's obviously worked and he didn't even need the injection so…we just sort of, I think we think we're quite blessed really that yes he has got JIA but it doesn't affect his life thankfully.
Some people had problems standing or walking for long periods of time (e.g. they struggled to walk to school or to the shops). Others had difficulties carrying things when walking (e.g. bags with school books or shopping bags). These difficulties may come and go during a flare or they may always be present (see ‘What is arthritis and early symptoms’ and ‘Disease progression’).
Cat is a full-time medical student. She is white British.
So what kind of things do the University do in relation to your arthritis to help or support you?
I got disabled student's allowance one year.
Can I ask how much that is? Is that personal?
No this is the thing. It's, they don't give you a lump sum, they give you things…
I see OK
This is what I didn't realise at the time and I did go along with it because I thought it might, might be useful really. I got that chair out of it that's worth about £600 and it's basically, it has loads of different gadgets and it's meant to be really supportive for your back so obviously if I'm sat working for a long period of time then it can get quite bad on my neck and my back and that chair does help. But to be honest I would have found money more useful and I know that sounds really shallow but the little things that, like I, up until about a month ago when it completely broke down I had a car and I'm struggling to manage without a car because, for example food shopping, I can't do that – I have to buy things on a daily basis pretty much because I can't carry lots of shopping.
With a car I was able to do that. Getting to placement, walking long distances is a bit of a problem for me so even walking to the hospital where I'm on placement at the moment, it's only up the road but it will take me about forty five minutes and if I did that every day there and back I'd be exhausted so just being able to drive takes that away and also means I can have that extra time in bed as well which, as I was saying, with my energy levels every little bit of extra minutes sleep really helps. So really I was hoping that I'd get something like that of it that could help me run a car for example or that kind of thing but I did get some useful things out of it. I think you have to apply for it on a, you have to keep reapplying for it and I just couldn't really bothered because I didn't really find it that worthwhile.
Some of the people we spoke to had difficulties walking short distances or even just standing up. They sometimes relied on crutches.
Anna is a school student. She lives with her parents and brothers. She is white British.
Have you ever found that you got half way through the day and then needed crutches?
Yeah a lot.
What happens then?
Well I was on a school trip in Germany in mid-December and I was told that there wasn't going to be a lot of walking and there was. So we spent twelve hours on a coach, got there and went straight out in the freezing cold in Cologne walking around the markets and it was probably a mile to the markets, a couple of miles round and a mile back and then that night I woke up at about half one in the morning and I was in so much pain. My ankle was bigger than it's ever been before and I didn't have anything there. I had like painkillers but they don't help and I had bandages but they don't really help so that was a very sticky situation.
That sounds terrible. So you just had to just wait until..?
Well I was in a room with my three closest friends and then, but they were all asleep and I didn't really want to wake them up so I just tried to get back to sleep and then I eventually did get back to sleep and then in the morning the group leader of the trip was, in my eyes, quite harsh. She said, "Oh well you're going to have to stay in the youth hostel by yourself all day because we can't…" even though my friends were prepared to stay with me, she was like, "Well they've paid for the trip so we have to let them go." But then two of my friends they carried me around Cologne for the whole day so I did go out.
What was that like?
It was quite fun because they just sort of acted as my crutches for the whole day.
Did they enjoy it?
Probably not as much as I did.
They sound like good friends?
Some people had difficulties using crutches. This was sometimes because arthritis affected the joints needed to use the crutches. Some did not have the strength to support themselves. Others found that using crutches for a long time put stress and strain on the unaffected joints and made them hurt.
Ryan lives with his mum and brother and is still at school. He is white British.
‘Cause like if I use the crutches and it’s like putting my arm weight on it, I’m like bending it and it was keeping it bent for a while it made my wrist go up and my, only this elbow ever went up, this one’s alright. But this wrist is a mess isn’t it. Some of my fingers are swollen. And on one of my fingers I’ve got like this critical swelling and it won’t go down at all ever.
No. ‘Cause it’s like stays like that. ‘Cause it’s really bad and the winter will start to do it again.
Can you move it, even though it’s swollen?
And when you say “Go up,” do you mean that it swells up?
Yeah. Swells up and goes really stiff so I can move it like that but once it swells up I can move it like that and that’s it.
And is there a pain with it, or is it just stiff?
Yeah it hurts when I move it, like if I moved it past there it would really hurt.
And that’s only if you use the crutches?
Yeah. After I’ve used the crutches it would hurt my elbows and that, and my wrists if I move them too much.
Some of the people we spoke to who had severe arthritis used wheelchairs. Ryan used a supermarket’s mobility scooter when he went shopping with his mum. Because of advances in medical treatment it is rare for young people with arthritis to use wheelchairs and mobility scooters.
Student, single, no children. Lives at home with mother. Ethnic background/nationality: white British.
Christmas 2001 that I had it done, just a few weeks before Christmas I, I did think, “Yeah, this is getting bad now” because I was in a wheelchair, my boyfriend had to take me around in a wheelchair to the shops and things. And I knew I’d be out of it so it wasn’t too depressing but it was really cold, I’ll say that. I don’t know how people do it in a wheelchair. It was freezing. I had to have a blanket on me at all times, a blanket and a hat and a scarf and gloves and, and that was strange. I look back on it and think that was quite tough but at the same time I think, I think of it fondly because it, it means something to me now because I’m not in a wheelchair and it means that, you know, I, it’s something to think about, you know, “Don’t be lazy, don’t forget about your exercises”. Because, you know, like that’s what can happen. And, and my boyfriend liked to, he liked pushing me around in the wheelchair He was like that for some strange reason so he didn’t mind too much.
And I was worried about that, I thought, you know, “Is he going to feel funny because, does he want to be seen out with me in a wheelchair?” But he’s great like that; he’s got no issues about that. I mean I have no issues like that, I don’t care how people see me because they don’t me so it doesn’t matter to me I, that, actually I was surprised people didn’t really look at me funny in the wheelchair. They, they talked to me like they weren’t sure whether I was mentally disabled or physically disabled and they would say to me in shops, they would speak clearly and loudly at me when they were telling me how much to pay. And I would say, “Yeah, OK”. And they’d think, “Oh, she’s all right, then”. And children didn’t really stare either. I think sometimes on TV they portray it like everybody stares at you and that’s what I was preparing myself for. But it wasn’t so bad.
People sometimes had difficulties with wheelchairs. For example, they did not have the strength to push themselves. Some said the streets were not wide enough and the roads were too bumpy. Not all buildings and places were accessible – they lacked ramps or lifts. Marie said that her son, Ryan, was measured for a wheelchair but it took so long to be delivered by the time it arrived it was too small for him.
The wheelchair – he needed it for the year before; he needed it for a long time. I actually borrowed one from my Mum’s boyfriend which was obviously massive to him. It didn’t have a seat belt and Ryan kept falling out of it when I was trying to push him round town because our town is quite a bobbly streets and he got measured for it so he was quite excited then Ryan, thinking, “I’m going to be able to get out now,” so, “I’ll be able to go the shops.” I could then actually go anywhere shopping because I could push him and I could take a basket. So he was quite happy about that but it, actually it took seven months for it to actually get to Ryan, Ryan was actually getting better on his flare ups so he hasn’t actually used it now but for the time I needed it, I didn’t have it and it actually it, when, when it was fitted to him, he had space each side of the wheelchair, now he has no space at all and the back is quite low to the size of him now. So it, it’s not really appropriate for him now anymore but it would have really come in handy, it would have got me and my son out the house a bit more because we were literally stuck in because even if we went out in the car, it’s getting back out the car to do, go round anywhere to the point – his birthday last year which is in January, he didn’t want to go, have a party, he didn’t want to go to the Zoo, he didn’t want to go for a fun fair, he didn’t want to go anywhere because he had no wheelchair basically to get him about and he don’t want everybody; he basically said he did not want to slow everyone else down.
Having access to a car could make a real difference to people’s lives. Those who had a car said they had more freedom and independence to go out whenever they wanted. Ruth’s family could not afford a car for a while so she used to go the hospital in an ambulance. She remembers spending long periods waiting to be picked up and dropped off. Dan said having a car opened up his life. It improved his social life and got him out of the house when he was feeling down.
The usual minimum age for driving cars is 17 but if you receive the higher rate of the mobility component of the Personal Independence Payment, PIP, (formerly Disability Living Allowance), you can hold a licence from 16.
Some of the people we spoke to passed their test at 16 and felt that they had a lot more freedom.
At 16 get them driving. Motability you know Elizabeth passed her test at 16 and she had just a fight to do that. She went; she did all the driving tests driving lessons, fantastic driving lessons. She went for the driving test, she was on crutches the Driving Instructor went up to the first floor of the examiners’ office and basically had an argument with the examiner saying, “Oh if she’s on crutches, oh she can’t take the test then.” “Well she’s on crutches,” “Well no she’s on crutches because she’s got arthritis.” “Well if she’s on crutches she can’t possibly drive.” And then, that was before she said, “Hang on, she’s 16. You can’t drive a car when you’re 16.” And then the driving instructor said, “Of course you can drive a car when you’re 16 if it’s a Motability, disabled driver,” and the examiner had never heard of it. And so that’s the level of ignorance that you have to fight on a daily basis.
Is it quite common to hear these stories?
Well I don’t know whether it’s common but it seemed, well certainly the driving instructor was bowled over by the attitude, you know, and sometimes Elizabeth’s so, Elizabeth’s driving now as an 18 year old, that’s not such a big deal, but as a 16 year old you know there was a, seemed to be a big deal. The college for instance didn’t have any mechanism for a 16 year old driving a car. Where does she, where does she park it? Oh no Lower Sixth can’t drive to school. They can’t park anywhere at the college. So she had to negotiate on a one to one basis where to park. So it was that sort of disability rights that makes the character that we talked about earlier.
People also talked about the importance of public transport such as buses and trains with accessible seats and affordable taxi schemes. David Z said he needed to live in a city with good transport links to shops. Ryan was given permission to use a supermarket’s mobility scooter when he went shopping. Some of the people we spoke to had Blue Badges so they could use disabled parking spaces.
Elizabeth is a full-time university student. She is white British.
It’s like if I was on a bus going home from school, they’re like, I’d get up for the older people because otherwise people would just say, “Oh what a horrible young girl.” You know just something about, but I can understand why people, it’s harder to get through town but I’ve found that there’s a scheme, like a TaxiCard thing, and ComCab, so I can call them up and arrange for a taxi to somewhere and it’s £2.50. And I can take three people with me. So I think that’s helped a lot as well.
But I find that with arthritis I have to plan, I have to be like okay well what station are we going to? And how long is the walk? ‘Cos if I can’t go out without a plan. I think I like to go into London, I wouldn’t like to do it as a job, I wouldn’t like to go into London but for a play or just like up to the museum, I went to the Tate to see the exhibition and just got a Taxi back to Waterloo and then a train home. But it’s fine, I wouldn’t find I’m that nervous because I’m used to it like with my parents we’d go up to [city] in the summer, we’ll go to the museums and stuff. But for other people that don’t live locally I can understand why. Especially in wheelchairs, it’s, it doesn’t have, the streets aren’t built for it, and it’s just not wide enough or it’s just not smooth enough. So yeah, and the hills.
People said that members of the public did not always understand that young people get arthritis too. Sometimes young people were given “dirty looks” if they used disabled parking bays. They were also asked to move from disabled seats on buses and trains for elderly people. Some moved without being asked because they were worried what other people would think or say.
Jazmin is a full-time university student. She is white and black Caribbean.
When I use a disabled parking space I do get the most horrendous looks from elderly people and there has been a few that come up and say, "Do you know this is a disabled parking space?" I'm like, "Of course I do, why would I be parking here otherwise?"
And when I was younger Mum obviously being very protective as she is used to shout in their faces and everything and it was very embarrassing but you know it's just like, they obviously because you, on the outside you appear normal, that sort of like you shouldn't; and you're young as well that you shouldn't be in that disabled parking space but it's sort of like, "I have the badge, I am legally allowed, you don't need to question me or look at me funny." Even in Wales, Jesus I was like in Tesco pulling up and it's just the look, it's like the look of death, it's like, "Oh my god, let me just go and buy some tomatoes in peace," you know. I always do get upset when it happens because you know I like elderly people, they're sweet and have so many stories to tell but when they give you the most horrendous looks, it's not very nice. It's not nice at all, it's like you wouldn't expect it but yeah sometimes you do, it actually, no. I have a friend with cerebral palsy, she gets it and it's like it's obvious that she has it, why are you questioning it? It's just you know not nice. Apart from that.
Sounds horrible, absolutely horrible.
When I just usually shrug it off and then they like complain to; and then I just tell my Mum or my friends afterwards and they're, "Oh Jaz just ignore them." I think last time it happened which was in Wales, like she's like, "Next time get a shotgun and point it at them," it's like, "No that's not going to help." But it cheered me up so. Even though it wasn't helpful the advice, the actual advice, it cheered me up and made me feel better so.
Home adaptations and practical aids
Some of the people we spoke to made changes to their homes or bought things to make life easier. Some things like stair lifts were expensive whilst other things like bath boards were relatively cheap. Sometimes people found financial help but others had to pay for things themselves (see ‘Money and financial support’). Occupational therapists could recommend what to buy. People talked about having wheelchair ramps, bannisters fitted to stairs, lever taps, walk-in showers, electric bath seats, good mattresses, wrist supports, steps to rest feet on at the dining table, and kettle tippers. When Chantelle was younger she could not get up to her bedroom so her parents moved her bed downstairs.
So that was in May 2010. I came home after a year, it was weird. I know it was, I mean it was a bit of an anticlimax in a way because you know it was very hard to adjust ‘cos I used to walk around my home, but now I can’t walk at all and spend all the time in the wheelchair, so I’ve now got to use my wheelchair in the house. The wheelchair never used to come into the house before so it’s a huge lifestyle change. You know not being able to get up and go and fetch the remote from the other side, or not getting up, do you know what I mean? It’s hard to adjust, you know the little things like that I couldn’t go upstairs to my room, had a stair lift all these years, to go upstairs I’ve never been able to do the stairs, I’m not you know the Bionic Man, but the stair lift had to go ‘cos I couldn’t get up there anymore so my room was put downstairs. Luckily I’ve got fantastic parents, you know, they're the best parents and they, well we, we applied for the grants from the local council to get an extension done, and we got that. We got a little bit of a grant but my Mum and Dad also funded a sort of side extension so I now live in there downstairs, I don’t go upstairs. We already had a downstairs bathroom anyway for a few years which was funded by my Mum and Dad again, wonderful.
Getting dressed and undressed could also be difficult. If people had difficulties using their hands then clothes with zips and Velcro on made things easier. If they had problems with their feet they could have insoles made for their shoes. Caitriona said knee-high socks kept her legs warm and supported. Gemma liked to “layer-up” when she is cold. She wears leggings, jeans and a chunky dressing gown at the same time. This warms her up and makes her more mobile.
Student, single, no children. Lives at home with mother. Ethnic background/nationality: white British.
Dressing I don’t necessarily avoid anything when I’m buying clothes but some zips I find difficult. If, when I try and button up jeans can be a little bit difficult as well but what I do is I try them on and if I can’t do it it on then I just don’t buy it. Everything’s different. Some buttons are really easy to do, some are really hard. Some jeans are really easy to get on. I don’t really understand how that works but yeah, it’s usually not a problem. What was I going to say? I’ve lost it.
Yeah, when it comes to buying clothes it can be quite difficult because I’m small. That’s the only problem that I have with buying clothes. Because of the arthritis I’m quite petite and I find that children’s shops are usually the best places to go. And it’s quite good ‘cos these days children’s clothes are quite similar to adult clothes so you can get quite good plain jeans And it has a lot of lycra in it as well which is great because when you have arthritis and you can’t pull your jeans up so well if they’ve got lycra in it’s much easier to get them on and they’ll have, some jeans I got from a, Tammy Girl, a children’s shop, have got popper buttons when you do them up. And they’re great because they’re absolutely no hassle at all. And then I wear a belt with it just to keep them done up. And that kind of thing, that’s actually quite good. I do like lycra in jeans ‘cos ordinary jeans are murder to get on because I’m not very strong with my hands so I end up with them stuck half way up my legs and trying to get them up further. And that’s the only problem I really have with dressing is, is pulling tight trousers up. I suppose it’s my own fault for wearing tight trousers.
Certain things I have difficulty with taking off because of my left arm. I sort of have to drag it over my head because I can’t lift my arms up. But I don’t have any help in doing that, I don’t ask for any help in that, like I say, I like to try and keep it quite independent because I can’t have somebody there with me all the time helping me get my clothes on and off. So that’s, that’s quite good really. I think I’m quite lucky in that.
But I would avoid unnecessary buttons I suppose. If I could get a top that didn’t have buttons as opposed to a blouse that did, then I would tend to go for the one that didn’t because it just, I tend to do them with one hand. Even though I can reach with my left hand it’s quicker to do it with one hand but it can be a bit fiddly so I tend to avoid buttons where I can. But everything’s got a button on it somewhere I’ve found. So it’s not too much of a problem for me.
Some young women described how putting on make-up or moisturiser could be difficult and another thing that required planning and thinking of.
Support with daily life and getting around challenges
People sometimes relied on others to support them on a day to day basis. Some needed help getting to the toilet or getting in and out of the bath at home. At school some needed a teaching assistant to carry bags, push their wheelchair or escort them in the lift (see ‘School, college and university’). People with jobs said they sometimes asked others for small favours if they were having a bad day, such as walking to the printer for them.
The amount of support people need varied. On bad days they might ask for help with small things like going to the shop. Some had adapted and learned to cope independently, such as washing themselves with one hand instead of two. Sometimes people required lots of help on a daily basis.
I definitely would say the most difficult thing is that, every single physical task is, is made more difficult. And not only that but when you are dependent, which I am at the moment, I haven’t always been but I am at the moment, you rely on, you go to everyone else’s clock, to an extent. My mother and father both work I have to go to the toilet in the morning before my father goes to work. I have to get up at half past five to go at quarter to seven, go to the toilet before he leaves for work. I’ve sort of trained my bladder to be, to be still all day till he comes home. And then I have to go to the toilet at night at a specific time so that he can go to sleep to get up the next morning. And, you know, they don’t have much of a life, they don’t have much of a, a social life but they, as I say, they work and they’ve got to go shopping and do whatever and obviously they try and accommodate me a lot but to an extent you’re going to somebody else’s timetable.
You can’t just, I mean it’s so frustrating to sort of sit on the edge of the bed there and there’s something you want just there and you can’t get it. It’s just there, you could practically, you know, lean over and touch it but because you can’t stand, you can’t get it and its ridiculous. I mean I sit here sometimes and think, “Well the toilet’s just there, its 15 feet away.” But it might as well be a hundred feet away. And that is, as I say, that’d be a big achievement, to be able to do those most ordinary things on my own and you know by myself and without help.
Preparing to go out
People talked about preventing pain, stiffness and mobility difficulties by taking regular breaks and sitting down. Some said that they rested lots in the evening and put hot or cold packs on joints so they would not seize up. Some said they lived life at a slower pace. They talked about pacing themselves and knowing their limits (see ‘Fatigue, sleep and energy levels’). They also talked about the difficulties of getting around certain places because of problems such as a lack of lifts on the London Underground. Elizabeth said she sometimes had a hard time getting out and about and said that cities and places like theatres were not built for wheelchair users. David Z said he had difficulties going to clubs and gigs to see bands because he could not stand for a long period of time. He started playing the piano in his own band which “opened up possibilities” such as meeting new people.
Some talked about how tiring it was when they had to plan basic daily activities that people without arthritis took for granted.
The main thing I suppose is just making the most trivial basic things a big deal, things that most people wouldn’t think about twice, bodily functions, washing, dressing, putting make-up on become something that you have to plan, something that you have to think about and something you’ve got to prepare for. There are lots of things that don’t even occur to, you know, to my mother that I can’t do that you just wouldn’t think of. Putting mascara on or oh I don’t know anything, putting moisturiser on or washing your feet or. As I say one of the, the greatest things for me if this, if these operations get me mobile, one of the best results would be for me to climb a step. Which seems, you know, people don’t think you, you don’t think when you get to a step, “Oh I’ve got to get up that now,” you just go up it. But, you know, for me it’s, it’s a big deal. It’s like going in a, going in a shop where you’ve got a big heavy door in front of you. Most people they don’t think about a door, they just open it and go in but if it’s a big, you know, a lot of shops have got automatic doors now but, if it’s a big heavy door and there’s no-one around to open it for you and even if there is a lot people just walk straight through and ignore that you, that you even exist. It’s every little thing, every move you make, every time you do, for me, every time you do anything. Turning the telly over with a remote control, even doing that is, is done differently for me than it would be for somebody else.
It doesn’t mean it’s necessarily difficult it just means that it’s got to be thought about and a different way, you find different ways to do all kinds of things, you look at aids, people give you aids and you get things on sticks and things like that that help you reach things. Every little thing is, you know, and when you spend so much of your energy and your, your emotional and physical energy on the little basic things then there’s none left for the, for the other things, the, the nice things.
As I said when, you know, if you want to go out for the day somewhere shopping or for lunch, if you’ve got to get up and get washed and dressed and put make up and jewellery on, get down the stairs into the passage and then down another flight of stairs, get into the car, fold the wheelchair up, put the wheelchair in the car, then get the wheelchair out to put you in the wheelchair, go round for a couple of hours wherever you are, then do it all again in reverse. If you’re lying in bed, especially if it’s a bit rainy outside or whatever you think, “Oh to hell with it, you know, I’ll just stay in.” It’s easier, it’s just easier to stay in and do nothing rather than do something and that obviously has dangers in itself because if you do that enough it begins to be, not psychologically difficult to go out but it, it makes it, you’re a little bit nervous.
Last reviewed August 2015.
Last updated August 2015.
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