Woman living with a serious ‘hidden’ illness in battle to help others

Claire Anscomb SUS-160817-162936001
Claire Anscomb SUS-160817-162936001

A young woman who has lived with excruciating pain and exhaustion because of a serious hidden illness is now battling to help others.

Claire Anscomb,23, wants people to appreciate that just because you cannot see a medical condition, it doesn’t mean that it does not exist.

Claire, who lives in Crawley, has Ehlers-Danlos syndrome, a genetic condition which means her body tissue is not strong enough to hold her limbs in place. It affects her connective tissues, muscles and joints.

“For a long time I was in awful pain and felt exhausted,” said Claire. “I had to miss a year of school, but no one knew what was wrong with me.

“Because I look healthy on the outside and have learned to manage my symptoms, some people have accused me of faking my symptoms and doing it for attention, while others think I am lazy.”

She says that because her condition is not visible, few people understand or empathise with her about it.

So Claire has teamed up with Fixers, a charity that gives young people a voice, to get people talking about hidden illnesses.

She says: “My Fixers project is about highlighting how common it is to have an invisible illness and to encourage public understanding of conditions you may not necessarily be able to see on the outside.

“Lots of young people are living with medical conditions that people can’t necessarily see, like diabetes or joint problems or chronic fatigue.”

As part of her campaign, Claire – who is a keen artist - has created a series of portraits of people with invisible illnesses.

“For the project I created portraits to show fellow sufferers as these very strong, positive people, even though they’re still dealing with these illnesses that make them more fragile than others.”

Claire exhibited the portraits in the Mall Galleries in London to raise awareness that there are lots of young people who may not appear obviously disabled, but are living with debilitating conditions.

Claire wanted the art exhibition to make people stop and think before making a judgement.

Kay Julier from EDS Support is backing Claire’s Fixers campaign.

She said: “One day people with EDS can be absolutely fine and live a normal life and the next day they can be completely disabled. Not being believed is a huge challenge.”

Fixers works with young people aged 16-25 across the UK by providing them with resources to help them campaign on issues they feel strongly about.

The charity has helped more than 19,000 youngsters across the UK to have a voice in their community on issues such as cyber-bullying, self-harm, suicide or transphobia.

For more information or to make a donation to fund more Fixer projects, visit www.fixers.org.uk