Ken's story: A 20-year wait for an osteoarthritis diagnosis

Ken Brown, 67, from Stirling, started suffering pain in his right hip in his late 20s, by his early 30s, it was so bad he went to his GP. As a nurse, Ken suspected he might have arthritis but the suggestion was dismissed and it was almost 20 years before Ken was eventually diagnosed with osteoarthritis aged 50, by which time his health had deteriorated so badly. He was forced to retire early.

Living with uncertainty

I’d suspected I had arthritis for years, so there was a sense of validation in eventually getting diagnosed. I’d kept telling my GP something was wrong, swollen knees, pain in my hips and lower back, so it was a relief to finally know what I was dealing with because, If you don’t know what you are dealing with, where do you start?

I’d been hit by a car when I was 10-years-old which fractured my pelvis and meant three months in hospital needing a wheelchair and learning to walk again. They did say I’d probably need a wheelchair permanently by the time I was 50 and I remember thinking, ‘No way, not me.’

I started with pain in my right hip in my late 20s, probably from where my pelvis had been pushed to one side in the accident, then there was pain in my right knee. I cracked on but by the time I was in my early 30s, it had really started to slow me down a lot so I went to the GP who just told me I was ‘doing too much’. They’ve told me that and so many other things over the years, I’ve been ‘too active’, ‘too young for surgery’ then they decided I did need surgery but the waiting lists were too long.

It was such a slow process, trying to convince my GPs of anything and I’m not shy but I find they don’t like to be told they’re not on the right track. Although having medical knowledge as a nurse helps in some ways, it’s not always a positive because you know what support you should be getting but can’t access. 

I was finally diagnosed with osteoarthritis at 50, after nearly 20 years of no help, and I now have a GP who has arthritis in both knees so is much more sympathetic. 

Challenges of being a nurse and patient

Although it was good to have an answer, it did take the wind out of my sails because, having worked with lots of elderly people, I knew how arthritis was going to impact my life and my work. The biggest benefit of diagnosis was I knew what I was up against, I could do the research, adjust my lifestyle, change my diet and stop the nightshifts and 14-hour-days.

I now have arthritis in my big toes, heels, knees, hips, elbows, shoulders, hands and wrists and I have gout in my smaller joints. At its worst, the pain is excruciating and I can’t put my feet on the floor.
In recent years I’ve had surgery on my right shoulder which has given me more movement but not helped the pain. I was also put on sulfasalazine because they thought I had inflammatory arthritis on top of osteoarthritis, but I had to stop taking it because the side effects were so bad.

Over the years arthritis slowly wears you down, it lowers your mood and expectations. I was prescribed antidepressants around three years ago and that felt almost as bad as the arthritis diagnosis because I didn’t want to admit I was that low or accept that I might need some support. My wife was relieved when I eventually said I’d talk to my GP about it because she thinks I’ve been depressed for years. It’s quite devastating when you realise you can’t do what your mind tells you that you can although I do still love to walk and find fresh air helps my mental health.

I’m still a positive person but it’s hard because I used to jump out of bed and go for a run, now I get up at 6am, take two painkillers then go back to bed. Delayed diagnosis has really impacted my life and basically cost me my job. I’d been in nursing for 38 years and that 20 year wait for diagnosis meant that I’d deteriorated so badly that I was forced to retire early in December 2019 although I did go back to help through Covid-19 because they needed me.

When diagnosed, I started researching and found Arthritis UK had all the information I needed and were an invaluable support, the online community is a great place to share ideas and support each other. Arthritis UK also gives people like me the opportunity to speak up, give those with lived experience the chance to explain the reality of living with arthritis every day. Getting people to listen is so important because arthritis impacts your whole life.