I’m 18 and bed bound with long Covid. This is what it’s like to be held hostage by your own body

My name’s Emily-May Stephenson. I’m 18 and living with multiple chronic health conditions; I write this from my bed, to which I am currently bound.   

While we’re all aware of recent decisions regarding cuts to disability benefits, most do not fully grasp how anyone can become disabled at any time – I certainly didn’t.   

 I was an active and healthy child. Aged six, I watched Matilda the Musical in London and walked out of the theatre announcing to my parents that I wanted to play Matilda. After years of working incredibly hard, I landed the role aged nine.

Off I went with a comically large suitcase, temporarily leaving home a few years earlier than most. After my run in Matilda, I was cast in the West End production of Annie, I then toured with the same show before Covid hit and my industry ground to a sudden halt.  

In August 2021, I contracted Covid along with many of my peers. As friends recovered and returned to performing, my health plummeted. I couldn’t walk up the stairs in my home, could barely leave the house and couldn’t go back to any previous hobbies I’d loved so dearly. I was soon diagnosed with long Covid, ME/CFS (Chronic Fatigue Syndrome) and PoTS (postural orthostatic tachycardia syndrome.) My career was over before I’d even reached adulthood.   

I decided instead to take my passion for photography and visual storytelling more seriously. Finding some solace in showcasing the stories of others and the world around me has, in many ways, helped me come to terms with my own circumstances. In the hope that I could be something of a voice for those who cannot use theirs as easily, I recently uploaded a series of videos on social media detailing my journey, my anxiety over benefit cuts and the unprecedented impacts that would inevitably follow.

• Long Covid cases 50% higher in most deprived households than in the richest
• ‘Being alive is utterly exhausting’: How Covid forced people out of work and onto benefits
• Poor women without education least likely to recover from effects of Covid, study finds

The response has been overwhelming. Some have told me it’s helped them understand the conditions of loved ones; others have said they feel much less alone. Two factors of utmost importance to those living with chronic health conditions: the feeling of being understood and the knowledge that we do not have to face anything on our own.   

Among the heart warming and often gut-wrenching comments, many expressed their newfound awareness that poor health can be just around the corner for anyone. Young or old, student or politician… Illness does not discriminate, and neither should those in charge of our country. Politicians are picking and choosing who should be offered help like children making mindless decisions in a sweet shop – when in an hour, a day, a week or a year’s time, they could be the ones in the position of the very people they are hurting.    

I have come far since those initial days of my illnesses but still struggle with day-to-day living. I’m severely fatigued, experience intense pain, small amounts of exercise wipe me out entirely for days at a time and I fear for how my life will look post university. It hurts that I will not be able to reach my full potential and am instead being held hostage by my own body.   

The most vulnerable in our society have already been subjected to so much and still choose to press forward. That is a type of courage that should be praised and not preyed upon. To anyone who decides to keep going despite the hurdles, I stand with you. We must continue to stand together.   

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