Lucy's Story - Arthritis Action

Lucy’s Story

My Diagnosis and Treatment

I was first diagnosed with arthritis in 2007, at the age of just 39. It was certainly quite scary to be diagnosed at that age. I never thought of arthritis as a possibility at the time, but it happens to young people too.

My arthritis began in just my left hip at first. I was told that I had a structural problem in the hip, which means I’m more likely to fall over. I sometimes feel like a wobbly table! I was later diagnosed in my right hip as well. The right wasn’t as bad structurally as the left, however it was been far more painful and symptomatic, with a degree of hyperextension. I’ve found it interesting that the same condition can be so different in the same body, between my two hips. With arthritis, one size does not fit all.

In the beginning, it felt almost like a grieving process whenever my arthritis got worse or shifted in any way. I found myself in denial. I would tell myself “It’ll be fine! I don’t need a stick or a crutch!” That’s until it really does get worse and I can’t fool myself any more. Sometimes it can be easy to keep a stiff upper lip, as it’s not exactly life-threatening. But at the end of the day, it’s my body, and it’s doing something I don’t want it to do. I would see older people going for a jog down the road and think, “Why is this happening to me?”

Upon diagnosis, the advice I was given initially was very basic because I was still young and relatively healthy – in short, I was told not to put on weight, to take some Paracetamol, and come back later when I was older and my arthritis was more advanced.

I’m very thankful that I have a good GP who I trust will make the right decision for me, but even so I always have to push to get more help. When my first hip was replaced in 2011, I had to speak to my GP several times before I was able to get a physio to help with my pain. Similarly after an x-ray, it took several discussions before I was able to see a consultant. I’d definitely recommend that you always keep pushing to see what more can be done.

Hip Replacement Surgery and Waiting Times

I was first referred to have hip replacement surgery for my right hip in September 2020, but due to the Covid-19 pandemic I only ended up seeing a consultant to discuss next steps in February 2021. It has been quite difficult to say the least. Arthritis is a disabling condition which causes immense pain, and joint replacement can really be life-changing. So being told that I have to keep waiting with this excruciating pain, amongst so many others awaiting surgery, was very difficult to bear. The NHS is stretched, and there are a lot of people out there in so much pain. It cannot and should not be ignored. I really hope they do something about the backlog in the coming months, so that people like me can receive much-needed pain relief as soon as possible.

I am lucky as my local hospital, St Richards Hospital in West Sussex, has an excellent rating and at the time of writing is top 3 in the country for getting through the pandemic backlog. Not everyone has this advantage. It’s almost a postcode lottery for how your local hospital is coping.

How Arthritis Impacted My Work

I found it tough to live with arthritis and not have anyone who understood my experiences and emotions. This was particularly a problem for me at work. My employer wasn’t sympathetic to me at all, especially when they were told my condition would get worse over time. For example, I had to fight hard to be given a better chair to help me cope, or for my files to be moved to an easier level for me to reach. I had a lot of discussions with my workplace about what could be done to help, but I received a lot of push-back. In the end I left after deciding I didn’t want to work in an organisation that didn’t want to accommodate me. I now work as a freelancer, as it’s a more flexible job that better suits my health and lifestyle. I appreciate that I’m in a privileged position to have this option available to me during a pandemic, but I’d highly recommend speaking to your employer and seriously considering all your options if you are in a similar position.

I believe there’s certainly an issue for people like me in the workforce, but there doesn’t have to be. Just look at the past year – the Covid-19 pandemic has revealed that people like me can work from home, in my own arthritis-friendly environment, and still get the same amount of work done – if not more! Small things like this could go a long way towards making people like me feel more included and help to make the workforce more inclusive, which studies show would also benefit businesses economically.

How It Affected The Little Things

Even with friends and family, it’s difficult to explain the specific grinding type of pain I experience to someone doesn’t have arthritis, the type that can take your breath away if you make one small, wrong movement. I’m the type of person who needs activity and energy, so when my mobility went I felt very constrained. I had to give up yoga, which was very sad as I always used yoga to relax. My circle of friends tried their best to empathise, but none of them actually knew how it truly felt to live with arthritis. The positive part of me would say things like “Aren’t I lucky, living in a country with the NHS? I’m very privileged.” Things like this would certainly help to keep my spirits up, but it’s not always so easy to stay positive.

Receiving Help

The COVID-19 pandemic has made this a difficult time for the healthcare sector, who are still trying to clear a backlog caused by the pandemic. Other than the odd check-up, I quickly realised that I’d have to look after myself. I went online and see what other help was available, which is where I discovered Arthritis Action and the help they offer for people to self-manage their arthritis symptoms.

It was the opportunity of speaking to others in a similar position that first got me interested in Arthritis Action. The charity’s Online Groups offered me a platform to interact with others who had similar lives and issues as myself. I enjoy the opportunity to share how I’m feeling with others, though there’s no pressure for those who prefer just to listen. Arthritis affects everyone differently and everyone has their own stories, so I loved hearing from other people and learning what helped them. Every time I join a Group, I learn new small things to help me improve my life. It gave me an opportunity to be proactively involved in my own healthcare. I think everyone with arthritis should consider getting involved with the Groups.

I can’t thank Arthritis Action enough for the life-changing work they’re doing. Arthritis doesn’t get the attention it deserves, as many people see it as something that’s not life-threatening and therefore not as urgent as other illnesses. But the truth is, it’s life-debilitating. I am in constant pain because of my arthritis. The NHS is so stretched these days, and there are just so many people in pain. It’s a real relief to know there are charities like Arthritis Action out there who I can turn to and get help where I need it.

I also have to give a huge thank you to St Richards Hospital in West Sussex – they were fantastic and have helped me through so much. The hospital’s Patient Advice and Liason Service (PALS) has offered me great support during the pandemic, and has been vital at helping me find the right people to speak to for any problems. I’d highly advise others to look into the PALS service if they’re looking for more advice and resources to help with their arthritis.