Living with the Label 'Chronic Fatigue' - Guest Post by Caroline Walker

Today, I am sharing the words of guest contributor Caroline who is sharing her experience of living with Chronic Fatigue Syndrome. As with each of these posts exploring identity, this might be something that you relate to or something you find challenging. We will be exploring different contributors' approaches to navigating their own understanding of identity with each of these posts. 

Each guest piece will be shared with the intention of creating a safe space in which the contributor defines and uses labels that feel right to them.  I encourage you to read Caroline's story with an open heart and if you have an identity story to share, I would love to give it a home here. Drop me your idea via hello@aplayfulday.com. 

"If you meet me, you wouldn’t know there was anything wrong with me. I look completely normal, I walk my dog every day and I have an online work profile that makes me look like a completely regular person. I have worked hard to practice this deception. However, since falling ill with what seemed like a simple viral infection during the millennium celebrations seventeen years ago, I have lived with Chronic Fatigue Syndrome (CFS/ME).

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Even reading this now, I can see that “lived with” sounds a lot more accepting than I have felt. Much of the time, particularly in the early years, I have been in turns dis-orientated, ashamed, frustrated, raging even, at the sudden fall off a cliff of my cognitive and physical abilities. I am like an angry toddler stamping her foot in tantrum: “I want the 'well me' back”.

CFS/ME is a label that carries what Erving Goffman described as “the stigma of spoiled identity”. Many years after it was first described as yuppie flu, it remains a controversial illness that many, even those in the medical profession on whom we think we can rely to help us get better, still believe to be 'all in the head'.

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Contrast this with my experience, four years ago, of having breast cancer. Cancer brings popular sympathy and flowers, fundraising runs and encouragement to fight it, to battle it and to kick cancer out. Companies and individuals fly their pink flags for a month to show their solidarity. I doubt many would know of the colour or awareness days for CFS/ME. Only when my main cancer treatment was finished was I was able to process it all.

Once I started processing, what became blindingly clear to me was that, compared to the CFS/MS, my cancer journey was easy - it was openly acknowledged, drenched in flowers and get-well cards, treated by experts who were numerous and easily accessible and supported by a range of holistic services. The ground shifted beneath me with this new diagnosis of course; I bought myself some new shit-kicking black boots and stomped around the fields with the dog every day to drive out my nerves. But on the operating theatre, while the anaesthetic dripped in to me, I asked the surgeon, “why can’t you take out the thing that’s really killing me?”

I look well now because you don’t see me when I am not: I am invisible in my daytime sleeps, in my early nights and late mornings. That's ok - I’d rather you didn’t see me in those moments actually. In my mind, the “me” that you see is the “real me”, not the weak and vulnerable little me that crawls up the stairs on all fours like a child because I don’t have the energy to stand up straight, or curls up on the floor rocking with pain. Some brave people do record their worst days but it’s not for me. I like to keep this disabled part of me separate, in hope that one day I can brush it away like an irritating flea and stride full-time into my future. Which is how I feel about the cancer by the way, putting it behind me with a “YOLO, Fuck It List” attitude.

Before CFS, I had had a busy life with my own business, new marriage and house, travel, social life and lots of exercise. Life wasn’t perfect but I had reached my 30s and finally felt like the pieces of my jigsaw were coming together into a contented place. Until the rug was pulled from under me, first with a sudden tug and then a steady withdrawal till most of the rest of that me was lost. Who was I now? How could I answer new people I met when they inevitably asked “and what do you do?” when the only answer I had was, “I sleep”?

I have tried explaining CFS to people but found it too difficult and I came to realise that it was unrealistic to expect others to really understand. If you haven’t experienced it yourself, how could you possibly understand the tsunami of destruction that this illness sweeps through lives? The major reason for hiding my illness though remained that I wanted to pretend it wasn’t happening. I can genuinely talk about how it’s taught me to value every good minute and to re-evaluate priorities and how I live my life. However I’d have much preferred one of the many other ways you might achieve the same goal.

I want to be financially independent, working a regular week at a job I love. Right now, I work part-time and intermittently from home, doing work that I love with natural fibres and slow textiles through which I feel that I have once again become grounded. Social media has also opened up the world to home-based creatives like me and I have a profile that enables me to keep in touch with many interesting and inspiring people.

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I’ve been inspired by other women with CFS/ME who have spoken more courageously than I about it on social media, women like @kimsmithhappy and @thethoughtfulknitter. Inspired by them, I am gradually learning to say “I have chronic fatigue syndrome” in my everyday life. Every time I say the words, I still flinch and hold my breath for the negative reaction but now it seems that it rarely comes; I feel a shift in the air and I am slowly gaining confidence through it.

So who am I now and what do I do? I am a proud mum and a creative. I have built a warm and loving home with my son, our opinionated small dog and 2 elderly and very vocal cats. I use my good days to stir up new ideas for projects and to dance round the kitchen while I cook. I live with CFS but it is not who I am. "

*Editors note: In the interests of making some of these terms quickly accessible, I have chosen quick links for reference. However, there is always debate and interpretation and ultimately, the key here is an individual's right to self-identify.