By Tom, who works for Ben

When I was a teenager, I had growing pains. And then more. And then even more. Some days I struggled to walk. Or get out of bed. Then they became more frequent, especially during the cold months of winter. My passion was football and, as a goalkeeper, I could no longer dive on one side. And then it happened to the other side. At 18, I was diagnosed with a form of arthritis called ankylosing spondylitis.

I was prescribed tablets but I couldn’t tell if they were working. The pain persisted. My parents were determined to help me and I tried all sorts of therapies… Bowen therapy, acupuncture, massage, sports massage, heat blankets, herbal remedies, swimming, heat pads and more. There was sometimes light relief from the pain but it never lasted. On bad days, I would be hobbling and, on better days, I wasn’t hobbling but I was often in pain.

When my workplace at the time could see I was suffering, they suggested I work from home one day a week. Other days, I was commuting into London from Bracknell which was a 100-minute journey door to door by car, train, tube/bus and walking. I was often left exhausted by the time I got to work so working remotely that one day gave me some respite. What probably didn’t come into consideration was how the pain made me slower at completing tasks and that getting through the day was a challenge in itself. This made me struggle at work and blocked any paths to promotion. Looking back, I don’t know how I commuted for all those years in so much pain.

As well as the physical pain, it also took a toll on my mental health. Socially, I could no longer play sport. Every time I sat on a train or in a venue, I had to find an aisle seat so I could stretch my legs. My confidence was hit and I couldn’t do the things I most enjoyed. Financially, I no longer bothered to save so I struggled there too and placed the odd bet to distract myself from the pain on weekends. Pain added a burden to all areas of my life.

When you think of arthritis, you probably think of back or joint pain. But about 30-40% of people with AS will develop uveitis (inflammation inside the eye). It usually comes on suddenly and is likely to recur. If left untreated it can cause sight loss and blindness. I, unfortunately, had this condition twice. So, it meant trips to the eye clinic at hospital, injections, drops, time off work (I had to delay starting my new job) and more pain. It was another hurdle to leap over!

My rheumatologist was diligent, but it so happened that he only saw me on my better days. Even on better days, I was still in some pain but the visible cues weren’t as obvious. Each time I saw him, I filled out a form which asked how I was feeling that day and if I was able to perform a range of everyday activities. On the better days, the scores were obviously higher than on a bad day. When I was finally seen on a bad day (I was around 22), the true scale of the problem was revealed. I hobbled into the room and it became immediately apparent that I wasn’t in a good way. I was then asked to try biotherapies (etanercept) which was an injection, self-administered into my leg on a weekly basis.  

With rheumatoid arthritis and some other inflammatory conditions, too much of a protein called TNF is produced by the immune system. This causes inflammation, pain and damage to your joints. Anti-TNF drugs, such as etanercept, block TNF and reduce inflammation. Although I didn’t like the idea of it, it was better than the pain I was dealing with. Within 24 to 48 hours, I was able to walk well again. I was able to sleep without pain. Getting out of bed no longer took 90 minutes, it was more like 90 seconds! I could jump. I didn’t need to cling onto the banister when going down the stairs. My family and I were overjoyed!

I am so grateful for my parents’ determination and the medication which I continue to use - I’m 33 now. I now only inject myself once every three weeks. It’s still a condition I manage and I feel pain as the injection day comes closer but it’s nothing close to what I was experiencing before. I hope it stays this way, but I will need to monitor it as I get older. I now have a family of my own and work at Ben, a very understanding employer, so it’s no problem if I have an appointment during the day to monitor my condition.

For anyone struggling with a similar condition, I encourage talking about how it’s making you feel physically and mentally to family members, friends and work colleagues – especially when the condition is at its worst. Hopefully you’ll be responded to positively and, if not, I’d encourage you to reach out to organisations that can help. If you work in the automotive industry, there’s Ben, or other organisations like Versus Arthritis, for example. From Ben’s recent research, 1 in 13 (8%) of the automotive industry reported that they were personally affected by arthritis and over 1 in 4 (17%) suffer from back and joint issues. You’re not alone – so please talk about it and get the support you need.

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If you work or have worked in automotive and you're struggling with this or anything else - we've got your back. Don't suffer in silence, chat with us online, or call our free and confidential helpline on 08081 311 333 (Mon- Fri 8am - 8pm).

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