‘I’m not in pain – it’s such a novel experience after so many years’
A Yorkshire woman has been given hope after being finally diagnosed with a rare condition. Ruby Kitchen reports.
EVEN THE smallest of routine tasks could take a Herculean effort, according to Alison Wrigglesworth, when coupled with the hidden condition which sees her own body attacking itself.
She has lived with a rare and incredibly painful auto-immune disease for over 40 years, only recently discovering she was not alone in the battle.
There have been times, the former headteacher, who lives with her husband, John, in Knaresborough, admits, when it has been like wading through water just to get through each day.
Now finally, having secured a diagnosis and an understanding of what lies at its heart, she is beginning to master control.
“When I get a cold or a slight flu, I actually feel better than normal because my body starts attacking the virus, rather than itself,” says the 56-year-old mother-of-two.
“There have been times where the only way I’ve been able to cope in the last 40 years is by pretending it’s not happening.
“It’s only now that I’ve started to feel in control of it, rather than it controlling me.”
Mrs Wrigglesworth, now a services manager for the Alzheimer’s Society covering much of North Yorkshire, has a condition called Undifferentiated Connective Tissue Disease (UCTD). It means her immune system, designed to protect her from bacteria or viruses, mistakenly attacks her healthy tissues instead.
The symptoms started with a swollen knee, after a fall at the age of 13. Swelling to the size of a melon, she had been spent months off school as she was unable to walk.
There were years of unexplained rashes, extreme
pain and fatigue, itchy, dry skin, stiff joints, swelling, and a shortness of breath.
Even in the height of summer, she has to carry gloves, because her hands get so cold. Swallowing can be so painful she cannot eat without water to wash the food down.
“I felt I had to scrape myself out of bed every morning,” she says now. “I would just hit the wall, much earlier than most.
“It’s really had a significant impact on my life. There have been times when I’ve just been too tired to go out.”
Mrs Wrigglesworth was a radiographer, but changed careers as she struggled with the night working and shifts. She had re-trained as a teacher, rising rapidly to become headteacher of a primary school in Leeds, before moving into the charity sector and reducing her hours.
“Nobody can be an expert in everything,” she says, referring to the length of time it took to secure a formal diagnosis after 40 years. “But there really needs to be better research, so that people can be given specific diagnosis more quickly, without having to go through this.”
With a diagnosis, Mrs Wrigglesworth has been able to better manage her condition. There are social media groups, meaning she can connect with others for the first time. She has changed her habits, including testing for food intolerance and found she is sensitive to eggs and milk.
She says: “I’m not cured, but I’m so much better than I was. I’m not in pain – it’s such a novel experience to me, after so many years. I know I still have the condition. There are times when I can feel my body grinding, but I just have more energy, more get up and go.
“There are so many hidden disabilities, and people don’t realise how hard it is,” she adds. “Even the simple things, like loading the dishwasher, walking the dogs. People don’t realise the effort it can take just to get up and go into work.”
It’s only now that I’ve started to feel in control of it.
Alison Wrigglesworth, who has Undifferentiated Connective Tissue Disease.