Matt’s Story

The first few years

I’ve been experiencing pain of one form or another since I was 16. It started when I was playing football and a player stepped on my foot. It was a completely normal part of the game at the time. However, my foot kept hurting for weeks and weeks, and I had no idea why.

Getting an actual diagnosis for my pain was quite a long process. Some of the doctors thought it was a blood clot, while others thought it might be tendonitis. Around two years later, I was finally diagnosed with kidney disease. At that point, they then connected the dots and realised that I had gout.

Diagnosed at 18

Getting diagnosed really felt like quite a long process from start to finish, especially for a teenager. This was the stage of my life where I was finishing school and heading into university. I found it difficult experiencing pain but not understanding what would trigger a flare up or knowing how I could control it.

On the other hand, it felt good to know there was a name for what I was going through and that it was a condition that was so well known and researched. However, I didn’t know what would happen with my future. At the time I was very sporty and I worried I wouldn’t be able to continue my football. I worried about my future and what the diagnosis would mean. I was also moving to the stage where I was preparing for my adult life. I didn’t know how this new condition was going to limit important things like my career and relationships.

When I arrived at University, I was very happy to discover that they had a joint clinic for rheumatology and kidney, which was perfect for my two related conditions. My family, friends, and girlfriend (now wife) also made such a difference in helping me come to terms with everything. It meant so much to have that support group around me while I was asking all these questions and still finding things out about my conditions.

How gout affects me

The thing that’s hardest is that conditions like gout and arthritis are invisible disabilities. It can be impossible to look at me and know I have arthritis, and even when people do learn about my condition, they don’t know how it actually affects me personally.

For me, my arthritis comes in powerful, acute flare ups with very little pain in-between. I wish more people understood that at any moment, for any reason, a flare up could begin and last between 2 and 10 weeks. When it happens, it’s all consuming. I’ve never experienced pain like it. It feels like someone’s tying a tight string around my ankle and pulling really tightly. I can’t do anything else. I can’t go out, I can’t read. After a few weeks of a flare up I can barely even talk. It takes over my life. Because of my kidney disease, I’m strictly only allowed specific kinds of medication, like paracetamol, which means my ways of managing the pain during a flare up are quite limited.

My flare ups were worst between the ages of 16 and 20. I still had no idea about my condition or how to manage it, and it was really hard to call up my school or employer and explain I can’t come in because my ankle hurts, without really being able to explain the seriousness of it – especially before I got my official diagnosis.

Once I was diagnosed with gout, I started learning how best to manage my condition. I changed my diet by cutting out high purine foods such as red meat and  fish. That was really transformational and reduced the amount and length of my flare ups. I also learnt the importance of staying active and hydrated. I was already quite sporty so I didn’t find this too hard, but discovering just how important activity can be was a real drive for me to keep going.

By managing my condition through diet and keeping active, I now haven’t had a flare up for 7-8 years. That’s an absolute dream that I never would have thought possible. It’s totally changed my life.

One decade after diagnosis

If you’re a young adult who’s been diagnosed with gout or another form of arthritis, I think it’s important to remember that it doesn’t control who you are as a person. You do have to take steps to help manage your condition, but you don’t have to do it alone. Charities like Arthritis Action are there who can help you understand what self-management activities can best help you control your condition. Until I joined the Charity, I’d never spoken to anyone else with gout under the age of 40. Soon after joining, I spoke to someone whose condition isn’t fully under control yet. Some of his experiences were the exact situation I previously went through. It was an incredible (and quite emotional) moment for both of us!

It’s so easy to feel like you’re alone when you don’t know anybody else who’s going through what you’re going through. If you look for support and connect with other people who are going through the same thing, then you’ll be in a much better position. I didn’t do this until recently, over a decade after my initial diagnosis, and I wish I had the opportunity earlier on in my arthritis journey. It helps so much to talk to others who understand what it’s like to go through a flare up and hear what worked for them. Everyone’s arthritis is different, but trying out what helped other people can be really beneficial and offer new perspectives.

I’m now a part of several different online pages and groups for my condition. A lot of the people talking just want to explain their situation and see if other people have been through the same thing. I’m a bit of a passenger and don’t talk much, but it’s nice to read what other people are going through, and hear what’s worked for them to manage their pain.