Table 1.
Sample demographics and characteristics.
Fig 1.
Phases of data collection and analysis.
Fig 2.
Thematic map.
Fig 3.
Can’t connect. This is a photograph, a bad photograph, I’d like to do a better photograph of me being behind a veil. Or a screen trying to communicate how I am. And people not coming through to other people. I wanted to do something to depict that. Will they listen? Will they hear?
Fig 4.
With RA every morning when you wake up, the first thing I find I do is see what number I’m at on the pain scale and then is it a “hard” 8 or an easy “8”- always influenced by whether or not you’ve managed to get a full night’s sleep on the pain front. On this particular day it was hard 8, one of those days where you really don’t want to do anything other than simply cope with the pain and the unrelenting unremitting nature of it as best you can. BUT you’re a person who is more than just their disease, you’re a wife and mother. You have obligations. You get up, get dressed and head to the sea side for the fun day out you promised your kids. On a day that’s a hard 8 though, your hands, fingers, wrists, are all too sore to be able to manage holding hands with your children. Imagine, holding hands with your 3 year old hurts too much? It’s a hard 8 all right. So I sat with my baby in her buggy and watched my children have such fun with their dad as they ran, jumped, splashed, got soaked and enjoyed their lives but wondered why I wouldn’t or couldn’t join in. The photo shows a sea of two halves for me. A beautiful calm sea far out, sun shining, and anyone walking past would have seen a dad having a great time with his children. For me I see the bit where the waves are crashing and breaking against the shore- the force of the waves represent my anger and rage at the disease, the havoc it has brought into my life. The crashing and breaking of the waves is often how I feel the disease attacks my body- it’s full on and pulls no punches. At times RA pulls you under like it’s a rip tide and before you know it you’re lost at sea.
Fig 5.
The orange out of place in the trees surrounded by apples. It’s how you start to…feel and question yourself in society sometimes. Just technically [you’re] the same but you’re very, very different. I think you feel sometimes, when you get the rheumatoid arthritis, how then [do you] fit into society? It seems for me [its] not working anymore. Even simple choices. I saw somebody [on the bus] being…really drunk and obnoxious [to two girls]. I wanted to get up and get them off. But it’s a realization I couldn’t do anything about it…with breathing, and the weakness, and the RA. And suddenly you start questioning yourself and looking at that picture, it makes me think when you’re out of place and then trying to redefine your place in society.
Fig 6.
A loss of self and a loss of identity describe what I see when I look at these shoes.
Fig 7.
The multiple…with knobs on.
Fig 8.
Well I always find things interesting, so I’m always like, would you look at that? Because…that’s not painful. That’s more just curious, kind of seeing where [the swelling] goes up to...
Fig 9.
Morning weakness, achiness and stiffness in my hands meant not being able to open my fingers wide enough to hold the bannister on my way down stairs; it also meant struggling to properly grasp and lift the kettle as I made my morning coffee. These first symptoms were what lead to a RA diagnosis being suspected.
Fig 10.
My rings not fitting almost became a representation of the beginning of my RA. They did not fit me for about 12–18 months after the onset of my RA symptoms. On the day of baby’s christening I was upset that I was not wearing any rings so I bought a cheap ring; I love that ring so much now because I got comfort on that day that I was wearing a nice ring! My friend has a jewellery shop and she offered to change the size of my rings but I said no because that just meant to me I was accepting my swollen hands and rings were forever! … About a year after starting medication my fingers were OK and my rings fitted me again. But I have days now, they don’t fit me and it just brings me back to the low period in my life where I was worried constantly about my fingers and hands. So this picture was taken on a bad day recently when I felt fatigued and my hands were swollen and my rings did not fit. It was like my hands were saying ‘no rings today’! I just felt dreadful. I was really tired. My finger was really swollen; I couldn’t put on my rings. And there’s the picture… just like, not today!
Fig 11.
I took that picture because a lot of people fail to understand if you say you’re having a flare and they don’t get how bad it can be. Most of the time when they see you, [it] would be when you’re having a better day. So [its] like “oh, nothing wrong with him”. So it’s kind of handy to have that, I’ve actually got to pull that photo out a few times and say, you know, the days you don’t see [me is] because my hands and my feet can look like that…Some people are like, “I get it”, and it’s actually been one of the most useful photographs to show a person when I’m having a flare up…And so this has been kind of a proof thing…but you know, it’s stuff you can’t see. But at least then they can visualize it. It’s even going to the doctors as well, just so they can see it. Because they don’t necessarily have swellings all the time and you’ve got pains and you can’t.
Fig 12.
This is my granddaughter (aged 8), squeezing my finger as she realizes that by doing this, that it causes relief from pain for me. She does this voluntarily from time-to-time, especially when she sees me wince.
Fig 13.
Achievement without pain.
Fig 14.
This is my old bedroom, and this is the walker that I had to use after my surgery… Because you think of walkers as [something that] people that are in their eighties or nineties use. And I know it was for a surgery, but… it’s less about the walker, but showing what you have to go through at such a young age sometimes when you have this. So, I didn’t have to use it terribly long, maybe a few weeks, … it also represents how old you feel in your body as well.
Fig 15.
Minding mind and body, one splash at a time. Early morning swims with my local swimmers group helps me feel strong physically and mentally. Out at sea, whilst moving through the waves, listening to the seagulls and watching out for jellyfish; I’m taken away from terrestrial problems of aches and pains, and wonderfully I get to carry an element of this buoyancy through the day.