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chronic fatigue syndrome photo: Bec Oakes

Living with Chronic Fatigue Syndrome

We all bend the truth slightly on dating apps to put the best version of ourselves forward. My profile details how I’m an international athlete and features pictures of me at Instagrammable restaurants in New York, in a minuscule bikini on a spa retreat, and skiing in the French Alps with friends. However, if I were being truly honest, it’d read something more like this.

24 year old Linguistics student loves Italian food, getting 12 hours of sleep per night, and spending too much money on clothing in order to temporarily forget about her chronic illness. Potential suitors must be tall, patient when she cancels dates at the last minute, and physically strong enough to support the weight of a 120lb girl when her muscles give in and she’s struggling to walk.

I have myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS). CFS is a fluctuating long-term health condition, and its main symptom is extreme physical and mental fatigue that doesn’t go away with rest or sleep. This can make it difficult to carry out everyday tasks and activities, as the amount of energy available to do so is much lower than in the average person. Other common symptoms include; muscle and joint pain, sleep disorders, memory and concentration issues, headaches, sore throats, dizziness, balance issues, digestive issues, nausea, and flu-like symptoms.

Because of the nature of its symptoms, which are found in a number of other conditions, CFS can be difficult to diagnose. I’d shown symptoms for over eight years before being diagnosed with CFS. In the years prior to my diagnosis I’d had over 30 blood tests, was tested for tumours, visited multiple specialists to test for the likes of lupus and rheumatoid arthritis, and was put on every nutrient supplement available at Holland and Barrett until every other possibility could be ruled out.

My condition is moderate. On a scale from 1 to 10, I’d say it’s a 6.5 – but this can fluctuate from day to day. On a good day, I go to lectures, do my French homework, and attend cheerleading training. I just about cope. But, it’s not easy. After about 45 minutes in a lecture, mental fatigue starts to kick in. My brain starts to fog and I lose the ability to concentrate, no matter how hard I try. Sometimes I fall asleep in lecture theatres. Or, I’ll simply sit there in a daze, completely unaware of what’s happening around me, then make a note to catch up on the podcast when I’m feeling better.

A few hours into an intense training session at cheerleading, a similar situation occurs. My body struggles to hit the motions, jumps and turns it needs to. Choreography I was performing perfectly 30 minutes ago has become physically impossible and any chance of picking up or memorising new choreography is at zero percent. I’ve lost count of the number of times I’ve struggled to keep my emotions in control – waiting until I arrive home from training to lock my bedroom door behind me and call my mum in tears because of the pain and how useless I feel.

But that’s not the worst of it. On a bad day, I’m pretty much bed-bound. It feels like a post-WHP hangover (not that I go out more than once or twice a month) that no amount of Fanta or Deliveroo can fix. Earlier this month, I had a bad day (which I like to call ‘crashes’) and didn’t wake up until 2.30 pm, despite falling asleep the previous night at half 10. That’s 17 hours sleep, yet I wasn’t at all refreshed. Every muscle in my lower body ached, my eyelids felt like they were being dragged down by lead bricks and I was hypersensitive to light, noise, smell, and touch. The only thing I could do was lie in bed in the dark, watching Grey’s Anatomy on minimum volume and brightness on my laptop, and wait for it to pass.

Then there’s the nausea. Another prolific symptom of chronic fatigue syndrome is digestive issues and, as a result, my stomach is sensitive to a number of foods, including egg and anything with a high-fat content. I went to a burger restaurant in London last summer and the food was far too rich for my stomach to handle. I consequently spent four hours vomiting into the toilet of my then-partner’s grandfather’s flat. People ask me why I’m so skinny. The not-so-pretty fact of the matter is because anything with a high fat content gets expelled very quickly from my body.

But, I think the worst thing is the way people perceive the condition. Before my diagnosis, my parents would constantly call me lazy for napping during the afternoon – now they call me Sleeping Beauty. I told a friend about my condition and he told me it was all in my head and I just needed to get over it. I’ll never forget the condescending tone of a previous cheer captain telling me to ‘get it together’ when I messed up because my brain and body just couldn’t sync up. There’s the disapproving looks I get when I don’t stand up on the bus for a middle-aged woman – remember not all disabilities are visible. Then there’s the fear. The fear that it’s only going to get harder when I graduate and move into the world of full-time employment. The fear that my future employers won’t be as understanding and caring as the University is about my condition.

Regardless, I like to look on the bright side. I might not be able to go on nights out, or buy standing tickets for concerts, or binge on Domino’s Pizza and Strongbow Dark Fruits. But, because of my chronic fatigue syndrome, I’m an international disabled athlete on Team England Adaptive Abilities Freestyle Pom. I’ll be representing my country with the back-to-back world champions in the USA in April. And, much to my absolute delight, I’ll never have to attend another 9 am seminar again if other options are available. If that’s not a silver lining, I don’t know what is.

For more information and support about CFS check the NHS Inform website. 

Tags: awareness, Chronic Fatigue Syndrome, Chronic Illness, disability

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