Dipesh’s Story

A difficult diagnosis

My experience with joint pain began in my knees when I was 26. I was a very active person at the time – I really enjoyed cricket and going to the gym – but as the pain worsened I wasn’t able to keep my hobbies up. After living with the pain for a few months, I started looking for help from my doctor. Every time I saw him, he always told me “It’s just a sports injury” and advised me to keep on a knee strap. It was incredibly painful, to the point where it would make me cry with pain, but I kept it on because that’s what they recommended. I had no idea what else I could do to help myself.

Even during this time where I was in incredible pain, I was still very keen to continue working. One time I had been in hospital all night and was absolutely exhausted, but still pushed myself to go into work. My boss was understanding about what I was going through, but by then I had taken so much time off that I was having conversations with HR, so wanted to go in as much as I could. That day, I had to use a walking stick and golfing umbrella in order to walk because of the pain.

As soon as my boss saw me, he told me to go home and rest. My wife met me as I was in too much pain to get home on my own, and took me straight to the doctor’s. I sat down in the waiting room, but when they called me in I couldn’t get up from my seat! After a lot of effort (and help from my wife), I was able to get in and explain the situation. At this point they agreed it definitely wasn’t a sports injury and took me to the hospital, where I stayed for a week.

The professionals weren’t able to diagnose me with a particular form of arthritis because all of the scans showed negative. One scan showed wearing on my joints, but there was nothing else that they could point to which was causing the condition.

During the worst period I felt like I was arguing with my doctors. I couldn’t understand why they weren’t giving me one single way to treat my condition. It was very frustrating and incredibly exhausting. After some time, I was able to arrange ongoing appointments with a rheumatologist which really helped to relieve my frustrations. They explained that I was on a journey, and that I should think of it as a marathon rather than a sprint. They understood my frustration, but explained that everyone’s arthritis is different and we had to find what was best for me.

Finding the right response for me

I really appreciated how much my doctor’s and NHS healthcare professionals kept me in the loop. Every month I was being given steroid injections as my knee kept flaring up, and they discussed all the options available to me. At one point they suggested gold injections to help with the flare ups, however they clearly explained the side effects and I decided it wasn’t the right solution for me. Living with joint conditions isn’t a linear journey, and it was good to know that my doctor’s were including me in the conversation and decisions about next steps.

After a few years of treatment with very little effect on my flare ups, my doctor suggested trying a drug called Yttrium-90. After some more discussion, I was willing to try it and see if it helped. After some time on the waiting list, I was finally referred for the drug, and it made such a difference to my knees. Everything started working again!

Beginning my self-management journey

I first saw a leaflet for Arthritis Action at my rheumatologist’s. I really wanted to be proactive and do something to help myself, so started attending the groups. Just listening to other people’s experiences was so important, both the bad parts of flare ups and the good things they’ve learnt to improve themselves. The group co-ordinators Ruth and Marc are really brilliant at facilitating the conversation and making sure everyone gets something out of the meetings.

When I was well enough, I made an effort to become more active again. I’ve always been fit and healthy, but I knew that I wanted to do as much as I could for myself. I hardly did anything at first, perhaps 5 minutes on a treadmill, but set myself long term goals and slowly built myself up. I wasn’t there to race anyone, just to slowly improve myself and my health. I’ve learnt that when I don’t exercise in some way, then my joints will play up.

In my late 20s, I learnt how to swim. I was so scared of getting in the water for so many years, but pushed myself as I kept hearing about how beneficial it can be for the body. Now, I’d recommend it to anyone! Even being in the water, or just walking around at the shallow end of the pool, was such a good way to start. It helped me to build the muscles around my joints and improve my dexterity. I became a member at a local hotel that had a pool and every morning before work I would try to swim, even just a little.

In 2004 my wife and I had a daughter, which certainly kept me active! I didn’t want her to be afraid of water as I had been, so I made sure to take her swimming as she grew up. She absolutely loved the water, and now has a lifeguard qualification! I couldn’t be prouder of her.

Improving my work-life balance

I’ve really learnt the importance of having a healthy work-life balance. I was in my previous job for 27 years, but it all became very stressful after I was put into a new role due to some internal changes. I was at my wit’s end – at one point I forgot to pick my daughter up from school because I was so mentally drained from my job! My wife became really concerned after that and found me an evening job that I could do, driving a minibus for a school in the afternoons.

Switching jobs felt like a breath of fresh air. I stopped spending all my time worrying about the next working day, and I was able to actually switch off during my downtime. The new job also allowed me to set up a daily routine, where I didn’t really have one before. I used the change as a reset. After starting the job, I made sure I was exercising every day and had times where my work knew I was unavailable.

I was soon offered another shift in the mornings which I took with both hands. Even with that extra work, I was still able to maintain my routine and self-manage my symptoms. Since moving jobs, my mental health has never been better.

It can feel really frustrating when you live with joint pain like I do, but it’s so important to stay positive and think of the long term journey. Your doctors and healthcare professionals are there alongside you all the way. It does take time, but something will come up to improve things. In the meantime, you can always focus on the things you can control, like staying fit and healthy, and reducing whatever’s causing you stress – for me, it was my job. It took over four years to find the right medication for my condition, but I got there in the end, and my life has never been better!