The Blog

Why Being Diagnosed With CFS Changed My Life for the Better

Without a diagnosis, I was ashamed to live in my own sickly body. In a state of perpetual conflict, I'd psychologically disown it, wishing it belonged to someone else. I started lying to it, "You're fine - the problem is in your head".

I hid my undiagnosed illness for four years. It was my biggest, guiltiest secret; a shame-ridden enigma buried deep within me. I was trapped in limbo, and there transformed from a carefree twenty-something into a lonely, frightened woman. And without the support of doctors, was left to smilingly tolerate all of it.

During my futile visits to the GP, I'd have the same response, "Well, I can see you're upset, but there's nothing we can do. Would you like to try antidepressants?" Leaving in a hurry, cheeks stinging with humiliation, I'd vow each time never to go back. And one day I did stop, deciding instead to accept the fact that getting better wasn't an option. Then came the solution - I would never speak of the 'illness' again.

Without a diagnosis, I was ashamed to live in my own sickly body. In a state of perpetual conflict, I'd psychologically disown it, wishing it belonged to someone else. I started lying to it, "You're fine - the problem is in your head". And every time I lied, it hit me with an onslaught of terrible symptoms: a cruel form of rebuke.

Dissatisfied with lying to only myself, I started lying to my friends, family and colleagues too. The manifestations of ill-health were part of a long and tedious list: extreme fatigue, brain 'fog', paraesthesia, dysphasia, depression, anxiety and more. They were unrecognised by doctors and thus felt incommunicable to others. So rather than admitting I couldn't walk short distances, I would tell people that I had walked, when really I had taken the bus. When there was no choice but to walk, I would do so and suffer the consequences. It was less humiliating to endure pain in silence than admit I couldn't keep up with anyone.

And there were many times, of course, when I simply couldn't keep up. Many people acted as if these physical short-comings were a figment of my imagination, or perhaps, something I made up to ruin their day. They would get irritated when I wasn't up for a bike ride, or that I didn't want to stay up all night drinking in dingy house parties across London. And why wouldn't they? I could only give them made-up excuses in pained embarrassment. I felt like a freak. I now know how resolutely people believe in good old fashioned, NHS-approved labels. They don't want to hear your life story. They want to hear the one magic word that will tell them why you're a bit weird so they can get on with their lives.

On a downward trajectory there is little time for reflection - desperately clinging to normality, lest it should slip away, becomes your only ambition. I continued working and socialising and functioning. I was so keen to do things, everything, all the time, that I no longer cared about the possibility of getting better because I just wanted to be a regular young person. I would push really hard only to crash even harder. I bought a bike. I went on a rock climbing holiday, and secretly booked a week off work afterwards to recover. I went out partying most weekends and came home in the early hours, only to be completely exhausted for the following week's work. I even lived in Japan for a year as an English teacher.

The inevitable deterioration of life crept in slowly - initially my self-esteem and dignity, then latterly, my job, social life and interests. By the end, I didn't even want to be healthy, I wanted people to believe that I was healthy, and I think I did a pretty good job. It's an achievement in itself how long I kept the charade going. However, after a big relapse this summer, I had to surrender to the fact that I was getting much worse. A couple of Skype conversations with my baffled but supportive family convinced me to move back home.

Back in England, there was another brief but agonizing struggle with doctors, after which I received a full diagnosis. I felt an indomitable avalanche of relief. It meant two things - I could finally stop pretending, and after I'd given up all hope, there would be a small chance of recovery.

It was a pivotal moment, being diagnosed. For many years, my symptoms were indistinguishable from one another: fatigue felt like depression, paraesthesia felt like anxiety, brain fog felt like early Alzheimer's. On one occasion, a doctor told me that CFS was a possibility, but downplayed any sort of diagnosis, lamenting poor treatments and a low improvement rate. My rallying cry was always, "How can I recover if I haven't been diagnosed?", a phrase met with the familiar blank expression. Once enlightened, I gained a crucial insight into my own well-being. I can now respond to and make objective measures of my physical and mental health, an essential tool for recovery. With a label for my illness, I can clearly inform those around me of the reasons for my limitations. And perhaps most importantly, I have learnt the difference between CFS symptoms and imminent death - something I had been convinced I was facing.

I feel I've been incredibly lucky. Despite having a life-altering illness, I've done more in the past few years than many healthy people. And even now, living at home with my parents, I am grateful to have renewed appreciation for the mundane activities that so many of us take for granted: I can get out of bed, read, write and walk. Recovery is slow and inconsistent, however. Some days I can do a lot and feel somewhat invigorated, and others, I'll huddle under the duvet watching stand-up comedy, waiting out the symptoms with the best patience I can muster. Yet with all this volatility comes great comfort, in the permanence of an authentic diagnosis: I have CFS.

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