First Person

The Darling Buds of M.E. Awareness Month

Audio: Read by the author.

For as long as I can remember, Spring has been my most favourite season. Spring is a season of natural wonder, of being astonished at the life going on around us. A season to revel in the little things, and perhaps be overwhelmed by the idea that this is going to happen for our whole lives. The rain and murmuring green of March; the happy daffodils of April; and the magical, monosyllabic month of May. May, the month in which I celebrate my birthday, and the month in which we spread awareness for M.E.

Myalgic Encephalomyelitis and its Symptoms

Myalgic Encephalomyelitis/M.E (also known as Chronic Fatigue Syndrome/C.F.S) is a chronic illness, with the defining symptoms of muscle and joint pain, muscle and joint weakness, unrefreshing sleep, dizziness, extreme headaches, gastrointestinal discomfort, allergies or sensitivities to food, brain fog, heightened light and sound sensitivity, failure to concentrate, and, most notably, extreme overall fatigue. It is an illness that 17 million people worldwide have, 250,000 of whom are from the UK, one of whom being myself.    

My Diagnosis

I was diagnosed with M.E. in 2012, after contracting glandular fever in 2011 and never recovering properly. I went from a high-achieving 14 year-old, predicted A*s in every subject (before the Baccalaureate marking system), to being unable to leave my bed for weeks on end, with searing red-hot aches down my growing limbs, and the feeling of failure and grief for the time that had been lost. Those weeks turned into months, during which I attempted half-days at school, desperate to catch up with friends and classmates, but my lack of focus paired with inescapable exhaustion meant that I fell further behind. Those months turned into a year. 

By September 2012, my mother was adamant that we get answers from the doctors we saw so regularly for blood-tests and examinations, as to why the symptoms of glandular fever had stayed for so long. She also had glandular fever, at the age of 17, along with my stepfather who had it in his early 20s, so they were quick to notice that something was wrong. Through the process of elimination, the doctors deduced that my prolonged condition could be myalgic encephalomyelitis, described to me as an umbrella-term illness for those who did not seem to recover as expected after experiencing a violent and nasty virus.

In the darkness that I existed in during these times, the diagnosis of M.E. was a small glimmering star, shedding just enough light that I felt validated, but not enough for everything to be seen clearly. It was a huge relief to put a name to this mystery illness that had swallowed much of my life, however, there was so much I didn’t understand about it and nobody, not even the doctors or specialists referred to me, could give me any answers.

light through a window onto a white wall

The label of my illness was validating but the excruciating pain that came with it did not become any easier. Not only was going to school almost impossible, but my family was experiencing deeply personal grief during this time. Stress can be a huge contribution to fatigue in people without chronic illness, thus stress affected me tenfold.

I had no concentration for any revision or homework after I came home from half-days, so I vowed to wing whatever exams I had the energy to go in for, and try to be proud of the results no matter how I did. With some natural intelligence, perseverance, and the grace of God, I was able to complete my GCSEs in 2013 with surprisingly good grades, including the double A*s in English Language and Literature which I still feel proudest of. I even attempted sixth form for six months, with my parents and I ultimately deciding I should leave in February 2014, to prioritise rest and recuperation over anything else.

A New Normal

Slowly, but surely, every day became a little easier, aided by the shining support network of my family, partner, and close friends. My physical health plateaued, leaving me with weakened muscles, but enough mobility to do things for myself most of the time. My daily life exists at home with my mother, stepfather and boyfriend of seven years, all of whom support me emotionally and financially, so I can live comfortably and in a state of my own new normal; normal routine, normal energy levels, normal pain. It can take a long time to find a new normal with M.E.; so much time can be taken up with fighting against a diagnosis, and trying to return to the ‘normal’ you felt before you became ill.

It was through the acceptance of my illness that I found enough peace to start feeling happy again. Although, it was shockingly hard to feel this while my contemporaries were still going to school, then university and finding jobs; their lives that I felt for so long should have been mine. In the words of Theodore Roosevelt, ‘Comparison is the thief of joy’.

After taking the time to slow down and not fight my illness, I was able to find some relief in the smaller things. In the change of the seasons when I have the strength to take my dog for a walk in the park. In the purrs of my cat beside me on my bed, when I am bed bound. Not every day is an easy or even happy one. Even though I understand little of why M.E. does what it does to my body, I now have years of understanding what my body is telling me, and what I feel it needs. I often use the phrase ‘ride it out’ in regard to the worst waves of pain that I feel, for I know that while the pain is difficult and nasty, it will subside and become my normal level of pain again.

How Do People Get M.E?

Many links have been drawn between those suffering from severe glandular fever and the eventual M.E. diagnosis after symptoms remain, even though blood tests show it’s no longer in the body. I jokingly call glandular fever a gateway drug, as it gave me a taste of what I was going to feel for many months and years. Having said that, the pain should not be joked about. Used as an easy punchline by sceptics, it is the ultimate invisible illness. An invisible illness, because even though those who have M.E. have many of the unrelenting symptoms I listed, doctors can find nothing abnormal in their bodies upon physical examination. Nor do blood tests find any active viral activity. 

So, as with my bout of glandular fever, it seems M.E. is most likely caused by a previous virus or infection the patient has had, and how their body was able to respond. This is the case with many other chronic and auto-immune illnesses. My mother, who I mentioned had glandular fever at 17 years old, was devastatingly ill for many years afterwards, until she was finally diagnosed with the chronic autoimmune neuromuscular disease Myasthenia Gravis at the age of 29, which she believes could have been linked to her glandular fever, or perhaps even another seemingly harmless virus. Nobody with M.E. will have the same experience, nor the same reaction to symptoms. I feel lucky to have some mobility and I ache to think of how many others have pain beyond what I can imagine.

The Millions Missing Movement

For those looking to learn more, I recommend the documentary ‘Unrest’, directed by Jennifer Brea, for a heart-wrenching and gritty look into M.E. Jennifer was 28 when she became ill and, following her diagnosis, documented her life. The documentary features many others from around the world and their stories, along with scientists, lawmakers, and advocates who have extensive knowledge and have dedicated their lives to discovering more. A huge part of ‘Unrest’ is about raising awareness of the millions of people who live with the illness every day. 

May is M.E. Awareness Month, with the campaigning particularly taking place during the week of May the 11th and finishing on May the 17th, coincidentally my birthday. International M.E. Awareness Day falls on May 12th, which is also International Nurses Day, in honour of Florence Nightingale’s birthday. Doctors today believe Florence Nightingale to have had M.E. after she had a chronic brucellosis infection and suffered for the rest of her life from many of the symptoms linked to the illness. She could be one of potentially hundreds of thousands of people throughout history who have had this invisible illness and died without answers.

It is during this week and this month that we campaign for the Millions Missing, those who are not at work or at school or out in the world, that we demand more urgent care for those unable to care for themselves, that we need research about why this illness silently takes so many people’s independence.

A Future with M.E.

All of this feels particularly significant during the current era of COVID-19. Among the grief and fear of this monster, I wonder how many more cases of M.E. will be diagnosed in people who contract Coronavirus and struggle with long-term consequences. Will there be a large increase due to the huge level of exposure we have to the virus? How many more Millions Missing will it take for increased funded research?

I hope that those who are able-bodied, having to stay inside during the pandemic, may have the realisation that this is the life so many people with chronic illnesses have all the time. A life that able-bodied people may call ‘contained’ or ‘claustrophobic.’ I hope even more that they decide to take action and join campaigning. Where able-bodied people may miss going to work and the shops, people with M.E. may miss being able to have a career or even being able to walk. 

When the restrictions are lifted, and people restart their regular lives of working, and going to the pub, and on holidays, people with chronic illnesses will be living the exact same life that they called restrictive, only with pain beyond being bored and watching the television for hours on end. This May, I am thinking of all the members in my community who are afraid and vulnerable, who may worry for their wellbeing if they catch the virus and if their bodies can even handle another life-changing illness. With the unsure end of this particular virus, spare a thought for those who are unsure if they will ever recover from M.E.

With the unsure end of this particular virus, spare a thought for those who are unsure if they will ever recover from M.E.

About Author

Freya Bagnall (she/her) is a freelance writer and wildlife enthusiast, living in Hertfordshire.