My Chronic Illness Story: ME/CFS Onset, Diagnosis and Symptoms

pippa laid on sofa in mouse onesie, under duvet with open book resting on top

“Dear M.E,   

If this letter was part of an inspirational movie, I’m sure I would be saying a heartfelt thank you. Dramatic music would play whilst I’d gush about how becoming ill changed my life for the better and helped me discover more about myself as a person, whilst I waltzed off into the sunset with a handsome prince and some kind of small fortune due to a dramatic plot twist. 

Unfortunately, this is not an inspirational movie. Instead of waltzing off into the sunset, I manoeuvre an unreliable wheelchair along a questionably uneven pavement. Instead of finding a handsome prince, I concentrate on finding the most qualified medical professionals to manage my condition… with bonus points if they happen to be attractive, of course. And my plot twist isn’t a small fortune: it’s not knowing if, when or how I will ever get better.” 

– Excerpt from Dear Chronic Illness complied by Pippa Stacey, Wallace Publishing (2018)

 So, here’s the thing. Besides sharing snippets in my charity book, Dear Chronic Illness, never before have I sat down to write about my full chronic illness story. In all honesty, my main reason for holding back in the past has been because of the unavoidable unsolicited advice and judgement these sort of posts can unfortunately spark, but I was also skeptical of there being no real ‘point’… no two people experience chronic illness the same, and I firmly believe that everybody has their own unique path to follow. What could anybody else possibly gain from reading my story?

However, I recently had cause to reflect on my own early years with chronic illness. It would be difficult to forget the confusion, fear and grief that the onset of my symptoms elicited, never mind how it felt to discover the lack of research around and interventions for my condition, and one of the things that genuinely helped me make sense of it all was engaging with other people’s blogs and social media posts. Even if our circumstances differed (illness severity, age, geographical location…) reading about others’ experiences played an important role in helping me tentatively figure out the next steps. So, whilst it’s incredibly important to highlight that my story is my own and not at all representative of each and every person with ME/CFS across the UK or indeed the globe, this post is for anybody who may be reading this in their own early stages of illness. Here’s how it all went down…

pointe shoes with me/cfs awareness ribbon attached, with millions missing handwritten sign in front
Image from 2017 Millions Missing Campaign

Back in the day, I was selected for elite training in classical ballet with a leading British ballet company. From the age of ten I trained intensively, fitting long hours in the studio, travel and performances around my schoolwork. As any other former dancers will know, if you’re to have any hope whatsoever of succeeding in the industry, you have to learn to push yourself far beyond your physical boundaries and what you think is possible, ignoring any pain in the process. It’s an approach that naturally becomes ingrained in everything you do, and shortly, you’ll see just how that played out for me.

I experienced some rather nasty injuries throughout my training, and around the age of fifteen, as I was making important decisions about my future, two things happened in rather quick succession. Firstly, I experienced a life-threatening anaphylactic shock: a severe allergic reaction to what we later found out was peanuts, after indifferently eating a handful for the first time at a party. Although frightening and a horrific experience I’m in no hurry to repeat, fortunately I bounced back rather quickly, after less than one evening in hospital… only to subsequently develop glandular fever.

Now, the key to managing glandular fever is to really take care of yourself, rest, and most importantly, avoid mentally or physically overexerting yourself. So straight off, you can see how this might have been something of a problem for me…. and that’s before you take into account that at that time, I had *no idea whatsoever* that I even had glandular fever. Even though I went to the doctor multiple times during this period, with what I thought back then was just a persistent seasonal illness, it wasn’t until years later (following a retrospective blood test) that I found out this was what happened.

And whilst all of this was going on and my poor immune system was going through a bit of a crisis, there I was, bulldozing my way through life. Although I was no longer training intensively in ballet, I was pushing through in the only way I knew how: powering myself against the feelings of poorliness, seeing them as a personal failure on my part rather than listening to those very early warning signals my body was sending me.

pippa at photoshoot in black ballet wear and pointe shoes with heavy make-up, sat on a counter and looking at camera taking a photo out of the shot
Student dance photoshoot from 2014, around 6 months before my health fully declined

Although there’s no definitive cause or trigger for ME/CFS, knowing what I know now, I believe my immune system was severely compromised following these two events, and then further aggravated by my busy and active lifestyle when I should have been resting and recuperating.

It was shortly after this time, during my upper years at secondary school, that I first started to really notice the mild but chronic symptoms becoming increasingly prevalent: constant headaches and sore throats, feeling foggy as though my head was full of cotton wool, and above all else, my strong and supple body and limbs being tightly grasped by weakness and fatigue. The same burn I’d feel in my muscles after a 10-hour day of training, I felt from walking up a flight of stairs at school. Although persistent and at this point unexplained, these symptoms were still very much at the mild end of the spectrum: they didn’t often impact my day-to-day activities, but simply made me feel hideous during them instead.

Increasingly fearful, I continued seeing my childhood GP and tried to verbalise what I was experiencing, hoping for a course of medication that would set me back on track or at the very least, some concrete answers. And although the doctor acknowledged the fatigue I was experiencing, as well as my energetic lifestyle and background, their advice was eyebrow-raising even back then. It was their belief that to combat fatigue, I simply needed to increase my stamina and physical fitness levels, with the suggestion of taking an hour-long walk per day… despite the fact I’d been undergoing intensive physical dance training for most of my life. And me, being the compliant teenager I was, took it to heart.

You may have seen my HuffPost ‘Undefeatable’ article in which I describe my experiences of being incorrectly prescribed exercise therapy, but in short, I followed the advice I was given and experienced some really quite frightening results. Rather than seeing my capabilities increase, as you would expect as my physical strength improved, the opposite occurred; each time I walked or ran a considerable distance, I found that I could do a little less the next time. I could no longer get through intense but achievable dance combinations I’d practically been doing in my sleep for the last year. The more I was trying to proactively increase my activity levels, the more irreversible harm it was doing to my body. Reflecting back now, it’s almost unbelievable that I didn’t acknowledge this at the time as yet another red flag.

Nevertheless, as my symptoms were still relatively mild, I continued bulldozing through life right through my school exams and most of my first year of university, taking on dozens of extracurricular things that I genuinely loved and made effort to ensure I could participate in. It was only during my final term of the academic year that things cranked up a notch, and eventually caught up with me. Naturally, because life is never straightforward, I was working abroad as a sports coach in Greece at the time. In my head, it must have been the long hours, lack of sleep, intense heat and poor diet offered for the workers that finally cumulated all of my experiences over the former four years and joined forces until I broke.

pippa paid in bed looking down, headphones in ears and cat laid on top of her
Resting in bed after a short trip out of the house

I just about managed to get myself home before things really spiralled, but from this point onwards, life was a completely different story. Every persistent symptom intensified, and they were joined by some delightful new friends too: chronic pain, long-term insomnia, extreme sensitivity to noise and light, allergies and chemical sensitivities, dizziness and orthostatic intolerance, and this constant feeling of just… unwellness. Like constantly being gripped by the worst kind of flu, the kind where any small exertion makes you feel infinitely more hideous. Sometimes I’d wake up from broken sleep and feel like I couldn’t catch my breath, or like there were bricks piled on top of my chest and all my limbs were pinned down so I couldn’t move them.

I’m just thankful that this difficult period took place over a long university summer: I had three months to rest (spending only a few hours out of bed per day) and really process what was happening. It was incredibly fortunate that my parents were previously aware of ME/CFS and recognised the signs and symptoms: it took my mum actually coming into my medical appointment with the same dismissive GP with me and really fighting my corner before I was finally referred to my local specialist service for the condition.

ME/CFS is incredibly difficult to diagnose, and it often takes patients years to find the answers they’re looking for. It’s a diagnosis of exclusion, meaning in my case, multiple blood tests were carried out to rule out other chronic conditions, a thorough assessment with a clinical psychologist was undergone, and importantly, symptoms needed to have been documented for over four months before a diagnosis could even be considered. Presently, there’s a lot of debate in the chronic illness community over differences in terminology and diagnosis: generally, it’s becoming widely accepted that ‘chronic fatigue’ is a symptom rather than a diagnosis, with ‘chronic fatigue syndrome’ a differential, shorter-term and often less severe diagnosis to that of ‘Myalgic Encephalomyelitis’. However, I got the best of both worlds: in October 2014, at the age of 19, I was diagnosed with ME/CFS.

pippa's arm with cannula inserted, hospital gown in background
One of three A&E visits in 2016

In total, it took over four years from the onset of my symptoms to finally being offered a referral, and then an additional two months to obtain a clinical diagnosis. Now, getting that diagnosis is all well and good, but when you’re experiencing a notoriously under-researched condition, your next steps are very much limited. With no treatment or cure for the condition, the vast majority of patients are sent away to just get on with it, and hopefully learn to manage their symptoms as best as possible. After I received some well-intentioned but mostly useless booklets on pacing, activity management, and diet and nutrition, plus a one-to-one session on study skills with ME/CFS from my local service, off I went, back home to my darkened room. I had my diagnosis, but as for a prognosis? To this day, there’s no real or quantifiable method of predicting how long somebody’s symptoms will persist, or if or when they could recover or experience relief. And to this day, that to me seems like one of the most difficult elements of living with ME/CFS.

Before we go further, the one thing I need to emphasise here is that although my physical health was a mess, I consider myself incredibly fortunate that my cognitive symptoms were nowhere near as severe by comparison. Although I had (and still have) some issues with brain fog and short-term memory, I have never experienced the severe confusion, inability to focus, blackouts and memory loss that many people with ME/CFS live with. I could still think clearly, comprehend stimuli, and even at my worst, I could concentrate on books and TV in short bursts of around 10-20 minutes, provided I rested afterwards. Because of this, I knew I wanted to return to university for my second year and continue my studies.

We’re going to talk about university in more depth in the near future, but looking back now, it seems kind of unbelievable to think that I managed studying full-time, living with friends and even having something of a social life during the final two years of my undergraduate degree. I still spent most of my time in bed, working from my laptop, and due to not feeling well enough to get to contact hours, I taught the majority of the course content to myself. A typical day would see me wake up, eat breakfast, work for a couple of hours from bed, have lunch, rest for another four hours, read notes, then eat my evening meal and spend some time in the house with friends, before going back to bed for a sleepless night and doing it all over again. When I was at my worst, I wouldn’t leave the house for weeks at a time, with any small trip out and about taking at least 48 hours of heightened symptoms to recover from. And that was in spite of forward planning, pacing, and using a transit wheelchair to minimise walking and movement as much as possible.

Although I was grateful to be clinging onto student life, it was an incredibly bleak time, and keeping my spirits up wasn’t easy. I’m just grateful for the people I had around me: I had family who were willing to help where they could, and friends who went out of their way to keep me smiling. Even though I spent most of the time squashing down and making light of how I felt around other people, being in that kind of environment helped me cling on to some sense of normality, whilst I was still adjusting to the chronic illness life becoming my new normal.

pippa in wheelchair, holding giant white teddybear and smiling
One of the first times using my wheelchair, celebrating my 21st birthday in London

I firmly believe that engaging with the online chronic illness community at this point in time played a pivotal role in this too: I found other people like me and made some firm friends, as well as setting up my own social media accounts and beginning to document my experiences. As I’ve talked about before, it was seeing my friends embracing their mobility aids that gave me the courage I needed to begin using my own.

Again, if this was a mainstream book or movie, it would be around now when some sort of miracle treatment or cure made its way onto the scene: one that would turn this story around and see me make a full recovery and go gallivanting on my way with life. As much as I wish that were the case, the reality for me personally was much less of a spectacle. Towards the end of 2016, I finally began to notice some subtle improvements, mostly in terms of pain levels and just generally feeling a bit less breakable in everyday life. Being careful not to revert back to my old ways and use this as leverage to jump back into life full speed, I instead felt ready and well enough to seek some further help from another specialist service: not treatment, but management and occupational therapy.

Although this may be frustrating if you’ve read this far, I’m going to save talking about learning to manage my condition and the things that worked for me for another post, where we can go into more depth. All you need to know for now is that there were none of those miracle treatments or drugs involved, the delightful kind you see marketed on the internet and profiting off vulnerable people. Instead, receiving occupational therapy, learning coping strategies and exploring medication for individual symptoms has played a huge role in helping me to slowly and gently improve my quality of life.

The cruel irony of ME/CFS is that you need to have a certain level of wellness to even be able to engage with the strategies that could possibly help improve things, something which excludes many of the more severely affected population from support. It isn’t lost on me how lucky I was to have that opportunity myself, at that moment in time. If you’re unfamiliar with ME/CFS and you’ve read this far, my take-home point would be that my own experience is by no means at the severe end of the scale. Even at my worst, when debilitating symptoms plagued my life, I would only have fallen into the ‘moderate’ category of this illness. Severe M.E. is a horrifying illness, and so many people across the globe are suffering in silence. You can find out more about Severe M.E. here.

pippa in wheelchair wearing formal pink dress and holding olivier award
Attending the Olivier Awards as a Be Inspired winner in 2018

Back to my own story, however, that brings us to where we are now. Over the last few years where my condition has been more manageable, I’ve graduated, completed a postgraduate diploma and now work part-time from home: something that could easily have been unthinkable at the beginning of this journey. I live independently and feel as though I have at least some autonomy and control in the choices I make as an adult, and quite frankly, some of the opportunities that have come my way have made for frequent *pinch me* moments. With mobility aids and adjustments, I can leave my house somewhat regularly and enjoy a social life, with a significantly shorter and less-debilitating recovery time. Generally, I feel a bit more resilient to the challenges of everyday life with a fluctuating health condition.

And that’s another reason why I wanted to share my particular story: so often, the only articles you find online are from those people who’ve made an eyebrow-raising miracle recovery to full-health from rather unconventional methods, or patients whose health has declined so much that it’s news-worthy.

You don’t see many posts from us in-betweeners, the ones who’ve experienced bad health to better health without the extremity of falling at either end of the spectrum. Because here’s the thing: my illness hasn’t magically gone away, and I still suffer greatly because of ME/CFS. My condition still dictates every decision I make, particularly in a world that just isn’t inclusive of fluctuating illnesses. However, my quality of life today is so, so much better than what it was a few years ago, and I don’t think the chronic illness community hears these kinds of stories enough. I hope anybody reading this knows that even if a full recovery seems unrealistic, it’s not unthinkable that things *can* become slightly more bearable.

pippa wearing read jumper and holding blue 'dear chronic illness' book
Publishing my charity book! Image Credits: Isaac Vaughan

My condition and illness severity have been relatively stable for the last couple of years, with only minor seasonal and situational fluctuations. And as of now, I don’t know what the future holds. For all I know, my health could improve a notch again in the future, or it could just as easily decline back to how it was at the beginning… perhaps even worse. All I know is that although things are still difficult, and sometimes it feels as though nobody in the world could possibly understand what it’s like, the way I live now is all I’d hoped for a few years ago. The bad days I experience now were once my good days.

As humans, I think we’re conditioned to always want more than we have, or think ‘if only I could manage this little bit more, I’d be happy’, and that’s something I’m definitely guilty of. But my goodness, I’m incredibly grateful for what I have now, and I feel confident I’m making the most of it. I’m doing what I can with what I have, and I’m getting better at recognising that that’s enough. And no matter what your own circumstances are or what they allow, I hope you know that your enough is absolutely enough too.

You can find out more about ME/CFS in the UK by visiting the ME Association or Action For ME. Please note that I am not a medical professional and cannot offer advice on your symptoms or diagnosis: if you have any concerns about your health, please book an appointment with your GP. As mentioned previously, I’d also hugely appreciate your understanding in *not* sending unsolicited advice, no matter how good your intentions may be. Thank you.

However, I’d love to hear any of your own stories in the comments below. How long did it take you to find your diagnosis? You can also find my other chronic illness posts here, and don’t forget to subscribe to see my future updates too. Thanks for reading, and I hope today’s a good’un!

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