Gillian Paterson was nearing burnout when she was diagnosed with an autoimmune condition called rheumatoid arthritis (RA). The pain and fatigue got so bad that she had to make the tough decision to leave her job. The medicine helped, but not enough. So Gillian decided to take her health into her own hands.
When you have an autoimmune condition, your immune system goes into overdrive and mistakenly attacks healthy cells in your body. According to Connect Immune Research, an estimated 4 million people in the UK are living with an autoimmune condition, 400,000 of whom have RA.
With RA, your immune system attacks the lining of your joints, causing inflammation, pain, stiffness and extreme fatigue, among other things. It can also affect your organs, including the lungs, heart and eyes. The symptoms are often debilitating.
Scientists don’t know what causes RA, but they do know that genetics and environmental factors are involved. Environmental triggers can be a virus, an infection, a trauma or having a very stressful life event.
Below Gillian explains how she got herself back to feeling great by taking responsibility for her health and trusting her instincts. By sharing her story, she hopes to help other people who are trying to navigate an RA diagnosis and get their lives back, too.
KF: How & when did you first discover that you had RA?
GP: I was diagnosed in September 2015, just after completing my Specialised Community Public Health Nurse Post Graduate Degree. That year I also moved to a new area, started a new job and settled my daughter in at a new school – needless to say, it was a very busy, stressful year!
Throughout that year, I had noticed my ankles and feet were swollen but I thought it was because I was spending hours sitting at my desk writing essays. By August, my hands and fingers were swollen, and I was struggling to walk down the stairs first thing in the morning.
Still, I was in complete denial and just thought I needed rest as I felt exhausted all the time. After writing for 3 hours doing my final exams, I could not make a fist my fingers were so swollen but still I ploughed on at 100 miles an hour.
I went to the GP in September as my wrists, knees and shoulders were very painful and I had very swollen wrists; the GP instantly diagnosed RA and urgently referred me to hospital. I was seen a week later by a consultant rheumatologist. I was 39 years old.
KF: What are your main symptoms and did something trigger it?
GP: My main symptoms were painful swollen joints and incredible levels of fatigue. Every joint in my body was affected, including my jaw. Some foods I could not eat as it was just too painful.
Chronic stress was absolutely a trigger in my diagnosis. My husband was working away and I was at home with two young children, working 30 hours a week as a staff nurse within the Health Visiting team and studying a masters-level postgraduate degree. I was absolutely burnt out.
KF: What was your reaction when you got the diagnosis?
GP: My reaction was shock and disbelief and the words ‘of course I do not have anything wrong with me, I am just a bit tired’ fell out of my mouth.
I was in complete denial and, to be honest, I think I still am. I do not consider myself a sufferer of any disease, just someone who has to work a bit harder to stay healthy.
KF: For you, what are the most challenging aspects of living with RA?
GP: During my recovery in 2016, I really struggled with what people thought as some days I looked well and could function, and other days I could hardly move. On the days I was well enough to go out I would not wear any makeup in case I looked too healthy.
The fact that no two days were the same was very difficult psychologically; this combined with fatigue was very hard. You can do something to help the pain but with fatigue, the only thing you can do is sleep; it’s actually more debilitating than pain, but not really recognised as such.
KF: How have you got back to a point where you’re feeling great again?
GP: When I was recovering, I used to stand in front of the bathroom mirror several times a day and tell myself it’s going to be okay. Saying it and believing it combined with teaching myself to listen to my body has been a huge factor in my recovery.
I am fortunate to have a very supportive husband, family and friends – without them, I could not have got to where I am today.
The correct drug regimen was also a game-changer for me and it did improve my symptoms but I was still not back to where I wanted to be. I still needed regular painkillers and still suffered from fatigue.
So, I started to find out more about RA and I stumbled on a programme devised by someone who relates his remission from RA to food and lifestyle.
After reading and researching more around this idea I decided to undergo food intolerance testing, which prompted me to learn more about gut health and its effect on autoimmune disease. I eliminated everything from my diet that I was intolerant to, which was not easy and very overwhelming to start with but bit by bit I started to feel better, with less pain and fatigue.
I had been retired from the NHS by then, which was utterly devastating and I did take some time to grieve for my lost career and ambitions which was an important part of my recovery. After this I started to shift my focus to my health and getting well again.
KF: What did you do next?
GP: I then started yoga, firstly at home with 1:1 tuition as I was terrified of any kind of movement and then when I felt more confident, I attended classes. This led to me signing up for a 6-week mindfulness course, which was hugely outside my comfort zone but as it was my yoga teacher that was running it, I decided to be brave go along.
This course was another game-changer. It taught me about the benefits of meditation and the danger of burnout. Reflecting back, it was no wonder I became ill! I also met others who were in similar situations to me and made some lovely friends out of it!
Within a few months of continuing with diet changes, yoga and mindfulness I was really enjoying the benefits, it was remarkable. I was pain-free and feeling really well. I was almost me again, but I was a bit lost in the career department, I needed a purpose.
KF: How did your drug treatment change once you modified your lifestyle?
GP: I was able to cut down on both my DMARDS (disease-modifying antirheumatic drugs prescribed for RA) and all the painkillers I was taking.
Finding a new purpose
KF: How did you find that last piece in the puzzle?
GP: I felt I had read enough online and wanted to take my learning a step further, so I enrolled in a year’s course to qualify as a Nutrition and Lifestyle Coach. I then set up Lomond Nutrition and Wellbeing in 2019. My first client paying was a very emotional time! I couldn’t believe where I was now compared to where I used to be.
From there I have completed a diploma in Allergy/Intolerance testing and I am currently training to be a Health and Wellness Coach, planning to specialise in helping people with chronic disease.
I don’t do yoga now (although I maybe should…) but I walk the dog every day, do spin class 4 times a week and attend weights classes 2-3 times a week.
I also do meditation most days (I am not perfect but try my best), as with everything it’s a work in progress! I bought a paddleboard this year and I absolutely love it!
KF: What do you wish you’d known at the start of your RA health journey?
GP: I wish I knew that as a patient I do have the power to improve my health – the power to heal is not just with the medics.
I was absolutely regarded by medical professionals and other RA charities as a disabled person. Their belief appeared to be that life has dealt me a tough card and that’s the way it is and nothing but drugs will ever help me.
KF: What advice would you give to someone who’s been newly diagnosed?
GP: The best piece of advice is to listen to your body. If you are tired, rest; if you eat something and it makes you feel rubbish, don’t eat it; and every day be grateful for what you have and do at least one thing that brings you joy.
Everybody has the power to heal their bodies. You just need to believe it, take steps to nourish it, move it daily and be kind to it.
If you’re interested in learning more about Gillian’s nutrition and wellbeing services, check out her website.