There’s little that’s more frustrating than knowing you have something wrong with you, but not being able to get anyone to investigate properly.
That was certainly how TV comic Katherine Ryan, 38, felt when she first developed lupus symptoms back in 2007.
At the time, Katherine, who was born in Canada, had just moved to London and was working in an office sales job.
The star of shows such as 8 Out of 10 Cats and Netflix comedy The Duchess started suffering from fatigue.
“I just felt really bad,” she says. “My joints were sore, I had fevers that I couldn’t explain and, most noticeably, I had a really bright coloured rash on my face.”
It was the start of a long battle to get a professional diagnosis that would last almost a year.
“I had really low white blood cells, but no one seemed particularly alarmed about that,” she says.
“There was a lot of frustration with doctors who didn’t know what was wrong and didn’t investigate. I felt quite fobbed off.
“I went to homoeopathic doctors, I went to GPs, I went to private dermatologists. One thought it was ringworm and I tried different creams that irritated it even more. I was even being told I might have leprosy!”
Then one Sunday afternoon, in utter frustration, Katherine decided to take herself to A&E at her local hospital. “I said, ‘I don’t know where else to go, I feel really sick’.”
While the staff were unable to give her any immediate treatment, a nurse she met there mentioned that she could be suffering with lupus.
“I only knew about lupus in a pop culture sense because I’d heard it joked about on shows like House and Seinfeld,” she recalls.
“I was crying. Lupus affects mood, it can affect your neurology and it can do all sorts of things. I was so stressed and very agitated and upset about it.”
She decided to try another dermatologist and finally she was given a diagnosis of systemic lupus erythematosus.
The incurable condition causes the body’s immune system to become overactive. Symptoms like fatigue, rashes, hair loss, joint and muscle pain as well as inflammation of organs and eye problems can come in “flare-ups”.
In extreme cases the condition can be life-threatening.
“It was confirmed with a blood test that I had all these markers for lupus,” says Katherine, who admits that at first she catastrophised all the worst-case scenarios. “I was thinking ‘oh no’, all these terrible things are going to happen.
“It depends on how severe it is, but people can need chemotherapy and dialysis and transplants, so it can be very serious.”
Katherine was prescribed the anti-malarial drug hydroxychloroquine for eight months and, thankfully, her symptoms cleared without the need for immunosuppressant drugs.
While there is no official cause of Katherine’s lupus, she believes stress may have played a large factor. “At the time there was no obvious trigger,” she says. “I think I understand now though that I was quite stressed.
“I was changing my whole life around, I was moving to the UK with a partner that I wasn’t really that keen on. I missed my friends and my family and was very isolated. I wasn’t eating well either – I wasn’t eating much and I’d started drinking a little bit more.”
Now she credits the autoimmune condition with forcing her to de-stress. “I love having lupus really because whatever led me to the path of calm clarity has been worth it.”
It has taken work though. “I went through a period of time thinking it was unfair that I didn’t have the energy my friends had,” she says.
“But then I realised life’s not fair and I had to take responsibility for my own health. Everyone’s different, but for me it was either I calm down or I get a fever, so the reward was high. I didn’t do yoga or mindfulness techniques – I went for a lot of walks.
“I became really Zen and focused on the things that matter. I just didn’t sweat the small stuff any more.
“For me, stripping the stress away from my life and eating an autoimmune protocol diet really cooled my autoimmune response. Since then it has never flared again.”
Katherine, whose sister has coeliac disease, also reassessed her diet. “I think that wheat and too much salt inflames my immune system.
“I was experimenting what works best for me, which is eating more like I was coeliac, even though I’m not.
“For example, one of my favourites is buffalo chicken, but I would swap breadcrumbs for cornflakes. Another is bolognese, which I’ll still make, but I serve it with rice.
“I was conscious about eating more alkaline veg and raw foods and I left out ‘nightshade’ veg like aubergine and tomatoes.”
Katherine has also cut out most dairy, except cheese, but does now enjoy a glass of white wine and the odd meat dish.
While she didn’t take medication for 10 years, Katherine, who is in a civil partnership with her childhood sweetheart Bobby Kootstra, who she reconnected with in 2018, began taking hydroxychloroquine again after suffering a series of miscarriages.
“I was guessing,” she admits.
“I thought perhaps my autoimmune response was responsible, so I started taking it again in 2020.”
The couple now have a baby son, Fred, six months, and Katherine, who also has a daughter, Violet, 12, says she feels better than ever. “I’m never sick,” she says.
“I’m probably the healthiest person with systemic lupus that I’ve ever met. I listened to my body and now enjoy the same things as everybody else… with a little twist.”
Katherine is working with Gousto (gousto.co.uk) to empower people to cook balanced and delicious dinners.
