Living with RA, but “I’m Fine”
I was 18 and only a few months into my student nurse training when I developed my first symptoms of RA. Initially it was just pain in the balls of my feet but gradually the pain and stiffness spread to my ankles, hands, wrists and then to my knees and shoulders.
I visited my GP a number of times with increasing symptoms and feeling generally unwell but when nothing initially showed up in my blood tests or x-rays he labelled me as a “neurotic teenager who was unhappy with her career choice”. Nothing could have been further from the truth; I was enjoying my nurse training. I did worry, however when patients for whom I was caring became more worried about my health than their own. One morning whilst working on an elderly care ward a patient called me over and asked me to draw the curtains around her bed space. She was an elderly lady and very frail, I was concerned as she asked me to take a seat next to her, as to what could be wrong. When I asked her she said “Nothing dear, but you look as if you need this bed more than I do”. She urged me to sit for a moment saying that if anyone asked for me I could just say I was busy with her. I will never forget the kindness of her actions.
Finally, a year after my first symptoms and with the help of a different GP, I was referred to a rheumatologist. When I met Dr Prouse for the first time I felt so relieved to be taken seriously at last. I was admitted to hospital for 3 weeks of hydrotherapy, physiotherapy and rest. At this point I felt so terribly unwell with pain, stiffness and fatigue. I couldn’t see that there could be any way out of the dark hole I found myself in. Too tired to even hold a conversation, I finished my relationship with my fiancé feeling it was unfair to drag him down with me, feeling he would be happier without me and my disease. I was very low and felt guilty for the impact my illness was having on my family and friends. I learnt very early on that RA does not just affect the sufferer but those around them too.
It was 10 months before I was able to return to my training, but I was determined that my disease would not stop me nursing. In 1992 I qualified as a trained nurse in adult care and two years later married my wonderful fiancé. We came through those difficult times after diagnosis together and although at times my RA has caused us problems he still remains my rock.
After qualifying I worked for 6 years on adult medicine wards at the North Hampshire Hospital in Basingstoke. This included a ward which at the time had Rheumatology inpatient beds.
I loved my role, but the physical demands of ward nursing were starting to take its toll on my joints. In 1998 two new rheumatology consultants joined the team at Basingstoke, as the team was growing they advertised for a new rheumatology nurse specialist. I applied for the post and was so excited when I was offered the job. It was a great opportunity for me to use my nursing skills and personal experiences of RA in a positive and less physical role. It has now been 12 years since I started as a Rheumatology Nurse Specialist (RNS).
Advances in RA treatment, the introduction of the biologics and more patient centred care has meant many exciting changes to the role. I have been very privileged over the years to share with many people with RA, their experiences of living with the disease. Everybody’s story is different but there are many common themes that seem to face all of us with RA at one time or another. These issues include feeling a loss of control, depression, the fear of disability, anger, frustration and guilt.
Many people seem to find it difficult to talk to others such as friends and work colleagues about their disease. They feel embarrassed by their illness and try to hide it. This is not helped by the many misconceptions that others have about RA. When I was 19 and struggling with my illness a friend of mine who had been away travelling in Australia for a year rang to say she was home and would like to meet up. She was aware that I had been unwell whilst she was away. I was really looking forward to seeing her again, as we walked down to the local pub I tried very hard not to limp. Due to pain my gait was pretty poor; my friend turned to me and said “Alison stop walking like an idiot it’s embarrassing!”
In a recent NRAS ‘Joint Endeavour’ publication (NRAS Volunteer newsletter), Barbara Hogg spoke of her patient journey and she too had experienced these issues. Many of the feelings she described rang true to me especially when she wrote of the many times she had put on a brave face and said “I’m fine” in answer to the question “How you are?” How many of us are guilty of the “I’m fine” reply, I know I am! It is now a standing joke amongst my family and friends that however I am, when asked I will always say “I’m fine” even when I’m not. Even my 8 year old daughter has picked up on it! Of course at times I am fine, but why do I feel embarrassed or guilty to say when I am not?
In the past a lot of patient education, literature and hospital consultation has focused mainly on the physical side of the disease and less on the emotional impact. Hopefully this is now changing, and we are encouraged more and more to discuss our emotional health as well as the physical. The theme for World Arthritis day last year was “Think Positive”. It focused on encouraging us to talk to others about our illness, setting achievable goals, making plans for the future and helping raise awareness. It also looked at the need for more psychological support and self-management courses. Hopefully with positive thinking and actions, we won’t be embarrassed to tell people how we feel and be able to say “I’m fine” and mean it.