As a nurse in a spinal injury ward, I was used to seeing lives change in a day. At age 48, I began experiencing unexplained pain in my smaller joints, but it wasn’t until I couldn’t move my body to get out of bed one day that I noticed the pain had spread to my hips, shoulders and hands.
I didn’t know what was happening to me or how long it would last. Having worked with people who could walk one day and not lift their body the next struck me with fear.
After a three-month diagnosis journey, doctors located high-inflammatory factors in a blood test and told me I had rheumatoid arthritis (RA). Surrounded by orthopaedic doctors at work, my diagnostic scans initially focused on testing for abnormalities in my spine and hip. It wasn’t until I had already undergone a series of images that a neurosurgeon suggested that I get some blood work done. When I finally spoke to a rheumatologist, he mentioned it wasn’t unusual for it to take a while to figure out what the problem is.
At the time, I had an idea of what RA could mean for my life as my mother had also been diagnosed with the condition. However, there’s a strong difference between understanding and living with RA. I don’t feel that others understand what we go through every day. The reality is worse than reading about the condition as people don’t talk about living with RA enough. My experience has seemed more difficult than what I noticed with my mother. I’ve been in pain longer, and the type of work I did, meant that I was on my feet all the time rather than being in an office.
RA is a pain that doesn’t go away whether you sit down or stand up. My feet are deformed, my shoulders hurt, and even lifting a teacup requires two hands. Getting dressed is a daily reminder of the condition. Putting on a bra is absolute agony. I sit on the edge of my bed every morning until the pain settles down and I feel like I can face the rest of the day.
RA can be isolating. The pain is ever constant and has chipped away at my self-confidence. The constant fatigue and impact of medication on my state of mind and body forced me to give up many of the things I enjoy, including being forced into retirement after around 11 years of working with RA. Closing the book on my nursing career has eroded my self-esteem and led to experiencing depression. Though it did initially help with alleviating stress in my life, I’m still dealing with pain all these years later. I still sometimes reflect on all the things this condition took for me while I was still young and thriving in my career.
Talking to others has helped me get out of how bad I feel because of the condition. A few months ago I discovered Dragon Claw, a patient support group for people with autoimmune diseases like lupus and RA. The group has connected me to others around the world to talk about what I’m going through. These kindred spirits understand me and that’s been life-changing. It’s pretty unusual that people just want to listen. They don’t get glazed eyes and turn away when I express my pain. As I’ve discovered, it’s not just about maintaining your physical health, it’s also about positive emotional wellbeing.
The current health crisis has caused my RA to flare up due to anxieties around the autoimmune disease making me more vulnerable to infections. A healthy diet, exercise, and socialising have been key in managing the condition. I focus on getting movement into my day through low-impact activities like walking and swimming during summer.
The hidden nature of RA has at times led me to underplay my symptoms to doctors and loved ones. My family doesn’t really get what it’s like to live with RA and expect me to bounce back from everyday things quickly. I’d rather keep the pain of RA to myself to avoid making others feel awkward. Nobody likes to be that person who is always moaning. That can also make it difficult to feel like I can fully express what I’m going through with my doctors, and they’re not necessarily getting the full picture or able to put themselves in my shoes.
I have found respite in my unique bond with my daughter, who has type 1 diabetes which is also an autoimmune disease. Before receiving my own diagnosis, I spent much of her life focused on keeping her alive.
To know that there are others who are going through similar experiences to me means a great deal. These conversations have broadened my horizons of living with the condition. The biggest revelation for me has been that everyone is an individual. Not one person experiences RA in the same way or at the same time. It’s a condition that can get worse or ease off at different times. My story might not be the same as someone else’s, many people like me have had to stop working, but other people have been able to hold on to their routines and pursue their goals. But there are always common experiences we share within our community.
My treatment journey has taught me to be kinder to myself and find balance in life. I’ve worked really closely with my health team to find the right balance of treatment and lifestyle changes to put me in the best position possible to manage RA. While I’ve always had high expectations of myself but learning to live with RA has driven home the importance of enjoying life holistically. Life is short and goes by quickly, so we need to do the right thing for ourselves. For me, this has meant not putting too much of my life into work and creating time in my personal life to spend with loved ones.
IMPORTANT LEGAL INFO This article is of a general nature and FYI only, because it doesn’t take into account your personal health requirements or existing medical conditions. That means it’s not personalised health advice and shouldn’t be relied upon as if it is. Before making a health-related decision, you should work out if the info is appropriate for your situation and get professional medical advice.