More Than Tired: Chloe’s Journey to an M.E. Diagnosis

Before my diagnosis of Myalgic Encephalomyelitis (M.E.) at the age of 14, I led an active and independent life, focused on school, friendships and family.

High school, however, became an extremely difficult experience. I endured severe bullying—both physical and emotional—which eventually forced me to move schools. Sadly, the same patterns continued, and the toll on my mental and physical wellbeing only deepened.

Looking back, my health had already started to change when I became unwell at around age 12. I went through many tests and scans, and was found to have problems with my thyroid. I was later diagnosed with Hashimoto’s disease, which has left me without a functioning thyroid.

Alongside this, I also live with combined-type ADHD, which added further challenges to managing school and daily life, particularly as my health began to decline.

Despite treatment for my thyroid condition, my health continued to worsen rather than improve. I began experiencing overwhelming fatigue that was very different from normal tiredness—it didn’t improve with rest and continued to worsen over time. By 14, I was often nearly bedridden for days, struggling to get up for school, unable to socialise, and feeling my ability to function slipping away.

At the same time, I was also dealing with severe bullying and fell into a dark depression, but deep down I knew something more was physically wrong.

As my symptoms became more complex and persistent, it became clear this could not be explained by my thyroid condition alone. After a long period of medical investigations and referrals, I was finally seen by a paediatrician. It was then, at age 14, that I was diagnosed with Myalgic Encephalomyelitis (M.E.), and told I may have been living with it for several years prior to diagnosis. I was placed under close monitoring due to the severity and complexity of my condition.

That diagnosis marked a turning point—putting a name to what I had been experiencing, but also beginning a very different and uncertain path.

What initially felt temporary gradually became unavoidable This diagnosis marked a turning point in my life, the diagnosis did not arrive with clarity or resolution; instead this marked the beginning of a unfamiliar reality requiring me to reconsider not only my physical capabilities but also my expectations for my future. Everything i once had planned had no longer a place in my life.

Living with whatever this complicated chronic illness was had a significant impact on my daily life. Tasks that were once eﬀortless now require careful planning and energy management. My professional and personal life have been shaped by fluctuating symptoms, ongoing treatment, and the need for regular medical care. Beyond the physical eﬀects of sensitivities to light and sound, mood disruptions, hot and cold flushes and many more other symptoms, the condition has also influenced my physical and emotional well-being, requiring a lot of resilience, patience and ongoing adaptation to almost anything i do other than resting.

Over time, I learned to adjust to these changes due to many breakdowns and questioning the life i had without the thought of feeling human. This involved me developing new routines, seeking support where I solely relied on self suﬃciency, and redefining success on my own terms. This process has not been linear nor has it removed any challenges from my life but it has fostered a deeper awareness of the realities faced by many other individuals whose lives have been shaped by M.E/CFS. While the illness itself remains a constant presence, it has also deepened my understanding of patience, adaptability, and the importance of accessible and compassionate care.

Today, I continue to navigate life with such a debilitating chronic illness as it is a central part of my life, but it does not fully define who i am. I continue to engage and work with my personal goals while acknowledging the boundaries that my health requires. I remain engaged in advocacy and creative pursuits to let people like me who suﬀer have our voices heard when people say that we are making it up or it’s asking for attention. To this day i still cannot express the level of fatigue or pain that i suﬀer but I’ve had to learn to live with this and just picture the life i want for myself to keep a sense of hope in the air.

By sharing this story of my experience living with M.E., I hope to contribute to greater awareness and broader understanding of the realities faced by individuals living with chronic conditions- not just as a single moment of diagnoses but as an ongoing, complex and deeply human experience

Thank you for taking the time to read my story- I hope this helps to paint a bigger picture of what invisible illness can do to an individual's life and how much we have to suﬀer to live a 'normal' life.