From shock to understanding: Clare’s diagnosis journey.

22 February 2022

Clare, 43, was diagnosed with rheumatoid arthritis in February 2020. She shares her story of diagnosis and how the time around it felt like a bit of a blur.

"My ankles were swollen like elephant feet."

One day, in 2019, I was in the park with my sons. I kicked a football; it hurt my big toe and it never got better. I was limping and was referred to a podiatrist who said it could be osteoarthritis or gout. I thought, ‘Aren’t they what old people get or what Henry the Eighth had?’ I got some insoles, then both feet started to hurt and I thought, ‘Oh maybe it’s the other foot compensating’.

In January 2020 my ankles started swelling up and I was referred for blood tests. My hands started swelling too and there was a point where I thought, ‘I’d better take my wedding ring off or it will need to be cut off’. I felt so tired and low. I was having horrendous night sweats and crawled out of bed in the mornings as my whole body was so stiff.

In February 2020 it was my son’s third birthday and we went to Thomas Land and did a lot of walking. By the time I got home my ankles were swollen and looked like elephant feet.

Then the doctor’s surgery called to say the tests hadn’t shown anything and that no further action was required. At that point I couldn’t even do up my buttons and I despaired. My mum called the doctor saying that I couldn’t go on like this. I didn’t have the energy to call back and advocate for myself, and I didn’t want to be seen as a hypochondriac. He saw me right away and referred me to a rheumatologist.

"For this to happen was a shock."

When I was first diagnosed with seronegative rheumatoid arthritis it was such a blur. I asked my husband to come to the appointment with the rheumatologist in case I forgot things because my memory was affected.

Afterwards, I remember saying to my husband, “This is shit isn’t it, I’ve got rheumatoid arthritis.” He replied, “Well you’ve got your diagnosis, you’ve got your treatment, the only way is up.” I know he was trying to be positive but I was realizing that I would have this for life. I opened the bag of medication with its different instructions, timings and doses and thought, ‘I need a degree to help with this’.

I’ve always thought of myself as a physically fit and healthy person. I was always that person who’d never catch a cold so for this to happen was a shock. It felt like something had taken over my body that I hadn’t given permission to. That’s still how it feels sometimes. I get frustrated and the will is there, but I can’t physically do things.

A few weeks after my diagnosis, COVID-19 happened. Suddenly I was a shielder and couldn't leave the house for months. Another thing to get my head around! But when I did catch it in January 2021, I was fine. I've just been for my fourth vaccine and when we discussed that I was in the 'at risk group' I just thought 'Really? That's not me'. There's still a disconnect.

"As women we’re used to more pain."

Sometimes I feel like I’m not being a good parent. When I needed help to get dressed I felt like I’m being cared for whereas I used to be a carer. As women we’re used to more pain but as a caregiver it’s hard to accept you can’t play that role in the same way. But it is important to ask for help. I’m learning to do that and luckily I have a supportive family.

When I got diagnosed my oldest boy, who is now 11, was a bit more independent. But my youngest child is four. He has just started reception and because of the pain in my hands sometimes I can’t put his shoes on. I don’t want to be a burden but I have to get my husband to help me. Sometimes he asks, “Mummy, how are your hands?” and kisses them better. He has a cabin bed and wants me to climb into the bed to read him a story and I can’t because of the pain.

Really though, it’s not so much the pain that bothers me. As women we are used to pain. The fatigue gets me down. I’m naturally a busy, sociable person but you need to learn to listen to your body. There are times where I feel I am about to crash and so if I can, I stay in bed. Sometimes I feel bad and like I’m being lazy but it’s important to take that break.

I also find the ‘admin’ difficult – the blood tests, keeping track of meds, the appointments, the scans. Nodules on my lungs were picked up in my first scans, so they have to be monitored too. When you’ve got a job, a family and a house to run, it’s that extra mental load.

My work are very understanding of my condition. They saw the progression of it because they knew my limp was getting worse and then in both feet. One day at the office I took my shoes off because my feet were swelling and I couldn’t get them back on and so my manager gave me a lift home. My manager always says to me that if it gets too much I need to tell them and to rest if I need to.

"Give medications a chance."

I’m wary of making it sound like the toe injury started my rheumatoid arthritis. I think it was a combination of things and there is some family history too. I won’t ever know for sure and it won’t make any difference knowing anyway.

I’m on methotrexate and sulfasalazine. It has worked but it took a while. I had some steroid tablets and have had steroid injections, most recently in my hand, and they helped. I would say to others - do give medications a chance and keep an open mind. Methotrexate has a bad reputation but for me it works. I was on the pill form, and I took it on a Saturday night, with my turn to have a lie in on Sunday. But some weeks it was still like a bad hangover and I felt scatty and irritable. I have just switched to injections to see if they make any difference. But I would still take the pills if there wasn’t this alternative. The pain relief outweighs the downsides.

I’ve joined a gym because my rheumatologist said that once I’m more on a ‘level’ that I should build strength. I’ve started weights and Pilates and I’m into dance fitness, which I’ve been doing for about 5 or 6 years, although sometimes I’ve had to stop doing it. My body isn’t as loose or free as it used to be and I can’t fling my arms like I used to. But I make sure I reserve energy for that because it makes me feel like me.

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