During my childhood, I was selected by a leading British ballet company to train intensively in classical dance. For five years my tiny body faced the rigorous demands of elite training, and my love of the movement made me welcome the burning pain that seared into my limbs after a day’s hard work.
I had no idea that just a few years later, I’d feel the same burning pain I experienced from ten hours of physical activity from simply walking up a flight of stairs.
The definitive cause of my chronic illness is as yet unknown, but around the age of fifteen, two key things happened in rather quick succession. Firstly, I experienced a life-threatening anaphylactic shock, and then went on to develop glandular fever. My poor old immune system found itself utterly overburdened, not least because all of this happened in the midst of my busy and active lifestyle.
It was shortly after this time that I first started to really notice the mild but chronic symptoms that were 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. However, it wasn’t until a significant relapse at the age of 19 that I was diagnosed with ME/CFS.
Myalgic Encephalomyelitis (ME/CFS) is a neurological condition that affects multiple body systems. Biomedical research into the condition is sadly still lacking, but what we do know is that it affects patients with a vast array of symptoms in various levels of severity. Somebody with a milder form of the condition may (with support and careful pacing) be able to pursue a relatively typical work and social life. Somebody affected very severely may be bedbound, completely unable to communicate, and require tube-feeding and around-the-clock in order to stay alive. The spectrum is extreme.
Personally, I’ve always been fortunate to fall around the moderate mark, closer to the mild end of the scale rather than the severe. However, as well as the symptoms mentioned previously, in those early days I also found myself contending with pain. Pain which simply couldn’t be willed away with happy thoughts and a paracetamol or two.
Pain manifests itself in many different ways in ME/CFS. As well as muscle and joint pain, I remember my skin feeling incredibly sensitive to touch, as though it were burning. I remember being acutely aware of my organs, like my heart was cramping up in complaint and my stomach was twisting in protest at what I had asked of it by eating. The audacity of me, I know…
And here’s the greatest irony of all. Like many others with ME/CFS, I was intolerant to some of the stronger medications that would typically be used to manage these symptoms. I was living with pain and almost allergic to prescription painkillers.
With persistence, however, I’ve managed to find medication I can tolerate and use this sparingly when I need it. I’ve also been really lucky to learn strategies for pacing from occupational therapists, that have helped me to manage my condition and somewhat avoid the worst flare-ups of pain that are the price to pay for overexertion. Over the years, I’ve also become more open to alternative methods of pain management, including mindfulness
programmes (body scans in particular have been hugely helpful!) and more recently, CBD Oil.
Although I’m one of the lucky ones and my symptoms today are much manageable than they once were, the landscape certainly hasn’t changed for other young people with ME/CFS. Without adequate research and investment in support services, how can we possibly expect people’s condition management to improve?
For me personally, I would have been lost without the online chronic illness community.
Managing your symptoms is such a personal experience but being able to talk with others who could relate was a huge source of comfort. It encouraged me to take ownership of my situation in the absence of more targeted support.
Whilst the medical profession is yet to provide the answers and interventions desperately needed for my condition, I believe there is so much to be gained from sharing experiences with others. Whether you’re seeking practical advice or simply a shoulder to lean on, it’s so important to remember that there are whole communities out there who will be rooting for you.
Onus offers valuable a platform for ongoing communication and mutual learning between individuals and healthcare professionals. It reminds us that there’s value in sharing our own experiences and being open to new ones, and most importantly of all… it reminds us that we’re not alone. And that’s something I think we could all do with hearing more of during
our most difficult days.