Monique Fenton from Empowering Disability in Enfield on how her condition affects her day-to-day life

I’d like to tell you my story; the mental toll, isolation, and even hiding that can come with a hidden disability.

I was born with a genetic condition but wasn’t diagnosed until I was an adult. I had been suffering with the symptoms all my life, so the diagnosis didn’t change my life as much as it made sense of all the different difficulties I’d endured.

For example, everyday movements always felt difficult, and I suffered many sprains, strains and tears. So, when I was finally diagnosed with Ehlers-Danlos syndrome (EDS) aged 38, everything made sense.

EDS is a connective tissue disorder that can cause frequent dislocations. My shoulder can dislocate when leaning on my elbow in bed, and my wrists and fingers can dislocate when I’m writing. I no longer know what it feels like to not be in constant pain or fatigued.

But when people look at me, they often don’t see anything ‘wrong’. That’s the thing about hidden disability: it isn’t visible, and neither is the constant struggle.

I mask my symptoms to avoid judgment or to spare others the helplessness my condition can make them feel. Constantly having to cancel plans on the day led to people no longer inviting me.

Boarding a bus is overwhelming. Once, the driver drove off before I got to a seat, and I dislocated joints; other passengers didn’t understand, saying: “There’s nothing wrong with you!”

Employers have dismissed me because my attendance was inconsistent. I tried going part-time, but my joints didn’t respect that it was a day I was due to go to work when one of them slipped out while I tried to get dressed.

The financial strain is only one aspect of not being able to work; there’s also the embarrassment of being looked upon as a benefit scrounger. The first thing people ask is: “What do you do?” Having to say “nothing” in response robs me of my self-esteem.

Eventually, I hid not only my disability, but also myself, with a huge mental and psychological cost. But I didn’t hide because of my disability. I hid because transport, workplaces, and people’s attitudes made life harder than it already was!

So, my message to everyone is please recognise that hidden doesn’t mean non-existent when it comes to disability.

This article is published with support from LocalMotion Enfield, part of a UK-wide movement for community-led change

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