A crippling condition forced Kate Dixon to give up her vocation, but ASCL Benevolent Fund provided help in the darkest of times, she tells Julie Nightingale.

A Friend in Need

Kate Dixon knew from childhood that she had a crippling condition, one that was likely to blight her life, rendering even the smallest physical act a painful challenge. 

The disease – originally labelled juvenile arthritis and later diagnosed as Ehlers-Danlos syndrome (EDS) – is inherited; her father, aunts and grandfather had all suffered from a form of it and the different types of EDS are caused by faults in some genes that make connective tissue weaker. 

“It means every single connective tissue in your body is like an over-rung elastic band; it doesn’t keep anything in its rightful place,” she says. 

Kate’s first childhood memories are of tears at being in pain going to sleep at night, but her dad’s robust attitude was: “Our star has to shine brighter. We’ve got these problems, but we have to work harder.” 

Despite the challenges, Kate progressed through school to university doing an English degree and Postgraduate Certificate in Education (PGCE) and starting her teaching career at a secondary school in The Wirral. She also married and had a daughter and though she was in constant pain and life was frequently interrupted by spells in hospital for surgery, she loved her job. 

She began using a motorised wheelchair in school but was still able to stand up in some lessons; when she was unable to take up a post as Advanced Skills Teacher (AST), she changed professional track and became a deputy head. 

Early retirement 

Kate had already been warned at 30 that she should be thinking about retirement but dismissed the idea. It was another 15 years before something happened that forced her to reconsider. 

“I was sitting in another deputy’s office at school, and she had in her hand an essay that my daughter, Amelia, had written as an assignment. Essentially, it was a disclosure describing in detail the impact my condition was having on the family. 

“She basically said, ‘My Mum cries every morning trying to get dressed, Daddy’s struggling to help Mummy,’ and described in close detail the difficulty of getting to work and being carried back into the house and the tears and agony that followed,” says Kate. “It was heartbreaking.” 

Faced with the choice of pursuing the career she loved or giving it up to devote more time to her family, Kate knew there was only one option. 

“I could have carried on and tried to cut down the workload at school but there would always have been another incident at school that needed me. But the impetus to leave had to come from my daughter. Yes, there were 2,000 young people to look after but I was lucky to have one child because of my condition and it was her voice that cut through. I went in the next morning to the head and said, ‘I have to make this stop’.” 

The decision, though she knew it was necessary, had a major psychological impact on Kate. Teaching was her vocation, and she came from a long line of educators. “I used to teach my teddies as a child. I love children and there had never been a moment when I thought I wouldn’t go into teaching as a career,” she says. 

The loss of that identity had a profound effect and combined with the ongoing pain, it led Kate to contemplate taking her own life at Dignitas, the assisted suicide centre in Switzerland. 

“It isn’t about ‘You hate your life, you want to end it’; it is you are struggling to cope with the pain and it’s really hard for your husband, daughter and family to watch. And your eyes are looking at them, begging and saying, ‘I’m desperate for peace’.” 

Pain psychologist 

A talk with her GP opened up the possibility of support from a pain psychologist, a specialist in helping people living with acute pain and its mental health consequences, but at that time there was a 12-month waiting list. 

It was here that the ASCL Benevolent Fund was able to help. 

The fund offers support in the form of regular payments, interest-free loans, specific grants for treatment or equipment relating to illness or disability, assistance with domestic emergencies and occasional gifts. The overwhelming number of people supported are ASCL members who have not yet reached retirement, including some, like Kate, who are mid-career. 

“The ASCL rep arranged funding which enabled me to pay for private help from the pain psychologist who I’d seen previously on the NHS. The psychologist gets you to look carefully at what’s important to you – there are the obvious things like family, and, for me, vocation was also crucial. What was important was finding a different setting for that vocation other than as a deputy head in a secondary school.” 

Kate says she hadn’t recognised how much self-esteem stemmed from her job and how she would feel without it. 

“It’s hard to find a new way forward when you’ve given up a role which is bound up with your identity. You grieve it for quite a long time to get to a point of acceptance that that is not who you are any more and this is the life you now lead. That’s what the pain psychologist helps you to do: you look at how to find value and how to find joy again.” 

It led to her taking up a new voluntary role with The Reader (www.thereader.org.uk) and she also continues to support young people with university and job applications. 

Amelia, now 22, is studying to be a paramedic but the last two years of the pandemic and being confined to home for long periods, have been hard on the family. Kate’s husband, Doug, who is her full-time carer, suffered a stroke in 2021. It means there are still dark days. 

But Kate says she is immensely grateful for the support the Benevolent Fund provided, which has helped her to find a new way forward. 

“The notion of the endgame hasn’t gone away as, sometimes, you are just desperate for the pain to stop, but the fund enabled me to access the help I needed. 

“I remind myself of the Dickens’ quote, ‘To love and be loved is life itself without which we are nought.’ I have friends. I have family. I am loved. All of those values are very strong in my life.” 

ASCL BENEVOLENT FUND 

Find out more about the ASCL Benevolent Fund at www.ascl.org.uk/benevolentfund 

Julie Nightingale
Freelance Education Writer
@JulieMediumHare

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