“I know it’s possible to control this disease, but I’m not there yet.”

11 June 2020
AJ with his two children and together with his partner.
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AJ, a father of three living in Bristol, was diagnosed with seropositive rheumatoid arthritis at 38. Five years on, his medication isn’t working yet. But AJ isn’t one to lose hope, even in the toughest of times. He’s here to share his story.

“It didn’t make any sense.”

It started with some inconspicuous swelling of my feet, but things quickly escalated over about six months. I woke up one morning and it felt like someone had gone to town on me while I was asleep, beating all my joints. After some blood tests I was referred to a rheumatologist and diagnosed with seropositive rheumatoid arthritis.

It was a shock. I was only 38! I didn’t cope, to be honest. I couldn’t really accept it. But then I thought, “There are worse things than this, I can get through it.”

“I’m still trying to find the magic mix.”

I went through a course of intravenous steroids, but they didn’t do anything. So, I was started on the usual arthritis medications, about four of them. Again, nothing worked.

Since then, my body has never reacted well to any medication. Every time, I hope that the next drug I try will be the one to make me feel better. I haven’t had the chance to get there yet, but I’m driven by the idea that I will.

“You might be okay one day and unable to walk the next.”

I have massively reduced mobility. My shoulder, ankles and knees are very impeded. At one point, I had surgery on my shoulder because I couldn’t lift up my arm. Not a lot of people understand that this is how severe arthritis can get.

For example, I have a Blue Badge and a mobility car, and yet people will sometimes come up to my window and tell me off for parking in a disabled space. They’re so surprised, and often quite angry to see me doing this. My disability is invisible, so it looks like I shouldn’t be there.

When people just don’t get it, I’ve always tried to educate and talk to them, instead of berating them for it.

“I’ve ended up in a very different kind of job to the one I always thought I’d do.”

My boss, Tom – he gets it. He’s done a phenomenal job of helping me move from front line security to a desk-based role. I can’t thank him enough; most security companies would’ve pushed me out the door.

Even though it’s sometimes frustrating to be pinned behind a desk, I feel very lucky to be where I am.

“You have to know when not to put on a brave face.”

Sometimes you feel like you have to act happy to avoid making the people you love feel uncomfortable. Occasionally you have to say: “Look, I love you to bits, but I’m stressed and unhappy right now, even though you can’t see it”. Forcing yourself to push through the pain all the time will just make you feel worse, so sharing and talking is key.

“People have been amazing to us during lockdown.”

Recent times have been very stressful. I’m shielding and my wife is an NHS nurse, so we spend a lot of time completely separated. The support she usually gives me around the house has become almost impossible, but thankfully my 16-year-old son has been a huge help. I never wanted him to have to care for me, but he’s been amazing. I’m so proud of him.

My two younger girls are bundles of joy (and energy). If nothing else, they keep me distracted. After seeing a lot more of each other during the daytime, they’ve started asking more questions about my arthritis. I’ve found ways to be honest about how I feel that don’t sound scary.

It’s amazing to see the community response to this kind of thing. Our neighbours, friends and family have been a massive support by delivering food and supplies.

“For those of us who aren’t there yet, we can get there together.”

Arthritis in all its forms can target you in so many ways, physically and mentally. I’ve been through some dark times myself. In the end, though, you can’t let it defeat you. You have to keep trying.

I haven’t got things under control yet, but I’m sure I will one day. It helps to remind myself that, for people with arthritis, we’re all in this together.

We’re here whenever you need us.

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

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