Most people will recognise Katrina Lynch’s face. Formerly Katrina Kordula, the 37-year-old was at the forefront of fighting for the rights of Polish immigrants in the North West for over ten years. She founded the Polish Welfare Association and was heavily involved in fighting for the rights of people from other countries who decided to make their home here.
In recent years however, Katrina’s work has had to take a back seat. She’s been diagnosed with the chronic pain condition Fibromialgia and is also suffering from Degenerative Disc Disease. Katrina’s life now is a far cry from the hectic schedule she used to live by, juggling a full time job, volunteering work and looking after her four children. During more healthy days, Katrina was constantly out and about.
Now, she spends weeks at a time unable to leave her home. On several occasions recently she’s had to employ the use of a stick to help her walk, and for the first time she’s spoken openly about the fact that the isolation caused by her illness almost led her to suicide.
“I was actually unwell through all the years that I worked, although not many people would have known it,” says Katrina.
“Fibromyalgia is a hard condition to diagnose and I had one doctor describe it to me as ‘the new medical fad,’ I knew differently though. For years, I was just being told I had growing pains. But obviously, after a certain point, you know you’ve stopped growing.”
Katrina’s symptoms were wide ranging and at points so severe that doctors suspected she was having a stroke.
“I had lost the power down the right hand side of my body, it was one of the most frightening things ever,” she says. “I was just getting nowhere fast and it felt as if I wasn’t being listened to at all. I think there needs to be so much more awareness around Fybromyalgia, and greater support offered to sufferers.”
Three and a half years ago, when she moved house, Katrina registered with a new GP.
“It was the best decision I ever made,” says Katrina. “My GP has been outstanding and I’ve had so much help and support since. My doctor has pushed and pushed for scans and tests. It eventually felt as if someone was listening to me.”
During the process of testing, it was also discovered that Katrina had Degenerative Disc Disease.
“That had been causing so many problems too. It’s pretty much where every disc in your back is showing signs of deterioration and as a 36-year-old, that shouldn’t have been happening to me. I had a really scary experience at one stage where I was in the supermarket reaching over for a bag of oranges and everything in my body locked from the neck down. It was the most terrifying thing I’ve ever experienced. I didn’t know what was happening.”
Gradually, as Katrina’s health took a turn for the worse, her life began to change dramatically.
“It was absolutely horrible. I was in so much pain at points that even getting out of bed and washing myself was too much. I became utterly isolated and as a result of that I got really depressed.”
This, says Katrina, was the lowest point of her life.
“Now, looking back, I can say that I was contemplating taking my own life. I was in such a dark place. People do not realise what it’s like to be in constant pain. They think that you’re someone who just complains a lot or is a hypochondriac. I had it all planned. I just wanted the pain to end. It’s a terrible, terrible thing to say, but I can recognise now that I was in a really dark place. I had a box sitting in the bedroom with all the tablets I needed, stored. I had letters written to my children. It was awful.
“The worst thing was that there were points where I really started to doubt myself. I thought I was going mad because you fight and fight to have your symptoms recognised and there are so many misconceptions. People aren’t educated about Fibromyalgia at all and you know that they think that it’s all in your head. That can really mess you up.”
Katrina says that although she’s still suffering with physical pain, she’s now in a more positive place.
“My new GP is fantastic. And through that GP I was given a referral to the mental health team and had counselling sessions at Zest. They were fantastic and that really brought me round in my head.”
Katrina says she’s determined to continue campaigning to change the perceptions around Fybromyalgia and the perceptions around disability in general.
“People will tell you that you look so healthy but what I go through, and what many other people go through is an invisible illness. I fought against using a walking stick for so long and eventually, I had to give in. There are days when I am not able to move and people don’t realise how difficult those daily chores become and how a lot of the times I can’t do the simple things that I used to take for granted.
“What I want most is recognition of the illness. No two people with Fibromyalgia are the same and there is a whole spectrum of symptoms. It’s not a standalone condition and there are mild forms and more severe forms. We need more research and we need more awareness. There are a number of support groups on Facebook as well and I think it’s brilliant that more awareness is being raised because I feel that there is a lazy approach to it at times from professionals and that diminishes the severity of the illness.
Katrina says more than anything, she wants the attitudes towards chronic illness to change.
“There’s real negativity towards those who have to deal with illness like this every day, particularly in relation to benefits like disability living allowance. It really angers me to hear people talking like this. People who suffer from Fibromyalgia and other conditions don’t want DLA, we would much rather have a cure.”