It’s hard not to feel suffocated by the stale air and sterile, white ceilings of a hospital ward. The incessant beeping and patient grumbling provides a constant, miserable soundtrack as you wish you were literally anywhere else.
When I was admitted to hospital in February, I was worried that everything I had worked so hard for was crumbling. I was off sick from my dream job, in a new city away from my support system, and recovering from a Valentine’s Day breakup.
When I spoke about my recent heartbreak with friends, most of them could relate. People were reassuring - they’ve been through it and they told me it’ll get better with time, and I nodded tearfully. If only the same could be said of my chronic illness.
Lying in that hospital bed, it was impossible to stop anxious thoughts invading my brain. Memories of the time an ex used my illness against me, worries about explaining my absence to colleagues, and the fear that this time I could end up entirely bed-bound.
Big life changes like a new job or a break-up can take a toll on anyone but, when you’re navigating them alongside a chronic illness, they can feel overwhelming. Sometimes you want a day off from being “strong”, and admit that you’re exhausted, in pain and feeling low.
I’ve suffered from Chronic Fatigue Syndrome or ME (myalgic encephalomyelitis) since I was 11 years old. After coming down with a nasty virus, my whole life changed almost overnight. Six months of gruelling health investigations later, it was almost a relief to finally have a name for my symptoms. Almost.
CFS/ME is a chronic illness - meaning there is no cure and I might never get fully better. The most common symptom is extreme fatigue, followed by headaches, joint pains, insomnia, sensitivity to light - the list goes on. Back then, the idea that doctors didn’t know how to fix me was terrifying. I thought my life was over.
The best way to describe how it feels is to imagine you are fitted with a dodgy phone battery that drains way too quickly. No matter how much I recharge and rest, I’ll never be able to function above a certain level. I have a headache every minute of every day. I can’t sleep without medication. My whole body feels like I’ve been run over by a truck thanks to crippling fatigue and debilitating joint pains. The slightest noise, touch or light can be completely unbearable. When my symptoms are particularly bad, it’s called a flare up, and it can totally wipe me out.
It helps to know that I’m not alone. In the UK, CFS/ME is estimated to affect 1 in 250 people (260,000 in total). Over the last few years, chatting to other people online who understand what I’m going through, and can offer advice on things like navigating a new job while sick, has been incredibly helpful.
Unfortunately, physical symptoms are not where it ends. The debate clouding the disease can also be exhausting to navigate. In the 1980s, the condition was given the nickname 'yuppie flu', which made it sound more like millennial burnout than a debilitating, incurable illness. Misconceptions about ME over the past four decades have made it hard for people like me to be taken seriously, even by some doctors.
Now, in 2019, people are talking about CFS/ME again but in a way that actually offers some real hope. At the start of the year, a number of MPs supported calls for more medical research to help improve treatments and diagnosis of the condition.
This was the type of news I was so desperate to hear in the early years of living with CFS/ME. For an entire year after my diagnosis at the age of 11, I was completely bed-bound. I felt totally isolated from my old, carefree life, and saw more of hospital than I did school. We didn’t have phones with the internet or social media back then, so it was tough to keep up with my friends and the outside world. Even on a good day, all I could do was watch TV, in a desperate attempt to distract myself from everything I was missing out on.
Just like that, I went from being on every school sports team, and taking part in synchronised ice skating at a national level, to not being able to sit up in bed, and missing a whole school year. I felt like I almost didn’t exist anymore. I stopped being invited to parties. Sometimes, people would joke that they wished that they had CFS/ME too, so they could miss school - but all I wanted was to be like everyone else and feel ‘normal again’.
My parents were constantly worried and couldn’t stand seeing me so miserable. They adopted an ex-guide dog to keep me company, which helped me start to feel human again. She’d always sense when I was having a bad day and come and keep me company wherever I was resting. Having a dog soothed the depression that I had slipped into.
Eventually, I was able to go back to school part time, but I would never return to being my old, sporty self. I was often paranoid that the other kids thought I was weird, even though everyone was really supportive. Sometimes, I’d have to take a taxi in the morning because I could only walk short distances, but I’d duck down so no one would see me getting out of it. When my body gave up mid-lesson, I’d end up in the medical room while my symptoms screamed for me to go home. Even now, the memory of that early period still haunts me - the fear that I could end up crashing and being that ill again is hard to shake.
Throughout school, I tried my best to keep up but still missed half my lessons so, when it came to picking up my A-level results, my hopes weren’t high. I had never dreamed of going away to university, because I didn’t think it was possible for someone with chronic illness like me. When I opened my results, it came as no surprise that I’d missed one of my offer grades. I texted my mum, who was waiting for me outside school, to let her know.
Then, my teacher suggested I check just to make sure I hadn’t been offered a uni place. I felt sure nowhere would be interested in taking me but, when I looked on UCAS, I’d been offered a place to study maths at the University of Bristol. I was shocked and elated. I texted my mum again, and when I got back to the car I could see her sat at the wheel crying her eyes out.
It didn’t feel real until the day I moved into student accommodation a month later. My mum was nervous about me moving away because of my illness but she knew how much it meant to me to go to uni. When the day came, she drove me to Bristol, helped me move into my room in halls and took lots of embarrassing pictures of me in my new home. I was so happy to have made it there.
University was a huge shock to the system - living independently meant I had to re-learn how to manage being ill day to day. Getting enough rest to function and manage my symptoms was a lot trickier in this new world of lectures, deadlines, new friends and nights out. FOMO became a constant battle, as I navigated having fun and the realities of chronic illness.
It took me years to learn to say no and take my body’s limitations seriously – and, I’ll be honest, it’s still a work in progress.
Like other chronic illnesses, CFS/ME can fluctuate and affect different people in different ways. Some days you’re better than others and, if you’re lucky, some months and years. According to US figures, the condition leaves one in four patients housebound for long periods. Some people never recover.
If you walked past me in the street, you wouldn't know there’s anything wrong - only the dark circles under my eyes and trembling limbs give me away. At uni, most people didn’t know I was ill, and part of me liked it that way. It was a weird feeling - suddenly not being the ‘sick’ one, and being seen to be just like everyone else.
It was at uni that I discovered my love of journalism, writing about film for the student newspaper. That year of watching DVDs in bed hadn’t been for nothing! My job now involves talking to people about their life experiences and I really believe that living with a chronic illness has helped me be a more empathetic person.
Now I’m 25, I don’t remember what it’s like to not be ill - chronic illness impacts every single aspect of my life. I’m in pain all the time, I rely on numerous medications to be able to function, and I never really know when the next bad patch is coming. But that’s just my new ‘normal’.
Over the last 15 years, I’ve witnessed how the internet has revolutionised how chronically ill people like me can interact with what’s going on - even on bad days when I’m too ill to leave the house, I still get a glimpse of what’s going on outside my bubble.
But, I’ve also had some bad experiences, especially with social media, when people have assumed that because I am smiling in my Instagram pictures, I’m not in constant pain. Like most people, I’d rather keep the times where I look utterly exhausted off the internet.
We all present our ‘best life’ on social media and I used to be no different. How I look online will never truly show the ‘but’s of chronic illness. I did this... but I was ill for days afterwards... but I had things in place to manage my condition... but I just want to enjoy my life as much as possible.
There are always things that you can’t see from the outside, or can’t make out from a picture. Over the years, I’ve been called lazy, a drama queen, a liar and told I didn’t deserve to be at university because of my illness. I know I'm lucky that my illness is not any more debilitating, and to have such a wonderful support system, but I wish more people understood that I’d much rather be well. So I’ve started to let myself be more open about the realities of living with CFS/ME.
These days, I try my best not to grieve for the old me, or to dwell on how my life might have gone without getting sick, and instead focus on taking each day as it comes.
Sunday 12th May is ME/CFS Awareness Day
If you have been affected by any of the issues raised, help and advice can be found here.