Surviving Still’s: Amy’s story

16 November 2020
Amy finishing a running challenge, at a music festival and dressed up on a night out.
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Amy, 26, has adult-onset Still’s disease, a rare type of inflammatory arthritis. After studying at university, she now works in adult care and has an Instagram account @survivingstillsdisease, which is a great network of online support for people with the condition.

Here, Amy tells us her story.

“I just knew something wasn’t right.”

It all began when I was 17. I had just started a Christmas temp job which involved a lot of manual lifting. I started getting pain in my bones, I was really fatigued, and it just felt painful to be awake. I also had a sore throat, a rash, night sweats and was shaking from a high temperature.

The doctor kept saying ‘it’s just a virus.’ But I was at the doctor’s two times a week, so I knew it was more than that. I went for a blood test and was told, “You need to go to hospital NOW”, because they said I had an infection. I was in the hospital for nearly two months and they still didn’t know what was wrong.

Everything goes through your head. I was young, so I was in denial and kept saying, “I feel fine, there’s nothing wrong with me.” My friends were really worried, everyone was.

“Sometimes I can’t believe I’m still dealing with it ten years later.”

I finally got a diagnosis in February 2012, because I had a bone marrow biopsy and my rheumatologist happened to look at it and see what was wrong.

At the time, I was relieved. I’d never heard of Still’s disease, so I didn’t think it would be something that was for the rest of my life. Now I often think, ‘Wow, as if I’m still doing this.’ I just thought it would go, but it wasn’t to be. Sometimes I sit and cry about it.

“At the minute I’m lucky, I’m in remission.”

Although I’m in remission, I still get so tired and I nap most days. I can also struggle to sleep sometimes with back and hip pain. If I don’t sleep, I get such bad headaches, so I always have to factor in resting.

It’s difficult if I don’t feel right and don’t really want to go places, but my boyfriend, family and friends are all really understanding.

“When I got diagnosed, there was just no help.”

Still’s is so rare. I didn’t see anything online or know anyone who had it when I was younger.

So, I set up an Instagram account, @survivingstillsdisease, just so people know that they aren’t alone. For example, I posted about getting moonface with Prednisolone, because it can be helpful to hear people’s comments. It’s worth it if it helps even one person know that this isn’t the end of the world, that they can still live a normal life after being diagnosed.

“I want to be really open about my condition.”

I used to find it hard to tell people. Going on dates and meeting new people, I’d be nervous to say something in case I scared people off. Once you tell people though, they’re normally alright and ask questions.

Sometimes it would come up naturally. Sometimes I’d casually drop it into a conversation: “I have a rare form of arthritis, but it doesn’t bother me so please don’t write me off.” Nine out of ten times it didn’t faze anyone, but I always felt I had to say it early on.

“I’ve felt like a bit of an outcast in the past.”

It didn’t work out with me living at uni, so I moved home. I couldn’t keep up with the lifestyle, even though I wanted to have the usual uni experience. Once I started commuting in, I found friends that also didn’t live that lifestyle.

Other things have made me feel like an outsider, I’ve been to the hospital to have my tocilizumab infusions, and older people ask why I’m there because I’m young.

“I’ll have a cry, but in many ways I’m lucky.”

In general, I try to be quite positive. There have been times where it’s been difficult, and I’ve sat and cried. Other times, I’ve achieved things I never thought I would, like doing Tough Mudder.

I find it cathartic to answer people’s questions about my condition, so I would say to others to open up and try to find people who have the same experiences as you. Social media is a great place for this.

Just remember, although your life will be different, you can adapt, you can still get a job, go to uni, and do lots of great things.

Our services

If you or a family member under the age of 25 has arthritis, our Young People and Families services is here to support.

Our service offers advice on how to live well with arthritis, medication and potential treatments, as well as creating a safe space to ask questions, receive information and develop support networks.

Our face-to-face services have changed during COVID-19, but you can find out more about what’s going on via your local Young People and Family service.

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If you’re feeling isolated from family and friends during these uncertain times, we’re here for you.