A moment that changed me: the mystery teenage illness that ruined my life – then saved it

FMore than fifty years ago, during the ‘long hot summer’ immortalized by the Stijlraad song of the same name, my teenage body began to undergo a mysterious, unwanted and life-threatening transformation. I had just completed my O-levels: as a treat my mother took me on holiday to Paris.

One morning during our trip I couldn’t get out of bed. My body felt like it was tied to the mattress with lead weights. An unusual swelling also formed at the front of my neck. My mother was concerned and when the tiredness didn’t go away when I got home to Sheffield, she took me to the GP for a blood test.

Thyroid problems ran in the family; this was noted and checked, but we were told the test results were normal. By this time it was fall and I had started at a local school for sixth form. I started making friends and enjoying the freedoms of sixth form – which included illegally spending Friday evenings ordering half a cider and black in one of the many pubs on Sheffield’s West Street, and dancing at the legendary Limit nightclub.

But the fatigue increased and I also gained weight. A lot of weight. From being petite and skinny and always picking at my food, my appetite had become colossal. By the spring of the following year I had gained five stone, was constantly out of breath and fell asleep in class, my heart racing, gripped by the fear of what exactly was waging war on my body. And that unnerving lump in my neck kept getting bigger.

Finally, we went back to the doctor, where it was discovered that the blood tests I had done six months earlier had not been ‘normal’ at all. Under the care of an endocrinology consultant, Graves’ disease, which causes hyperthyroidism, was diagnosed and I began taking medication daily.

Every week I went to a clinic where evidence of what was known locally as ‘Derbyshire neck’ (an enlarged goiter, the medical term for that lump on the front of my neck) was all around me. But even though I lost weight as quickly as I gained it, my year of physical trauma left both psychological and physical scars. Hating my appearance and now being underweight again, I chopped off my hair and wrapped my body in oversized cardigans and voluminous dresses, while my friends enjoyed form-fitting clothes. And while I longed to move beyond vivid imagination and into actual sexual experience, I despaired of anyone ever looking at me with desire.

Although the tablets kept the thyroid under control, they were only temporary: I would have to have surgery to remove most of the gland if I wanted to have a chance to function properly. By now I had failed my A-levels because I had missed a lot of school and fallen behind my peers. The operation itself was not without complications; an unknown allergy to the anesthetic almost finished me off. But in the long run, it saved my life: I would retake my exams and go to college, even though it would take years before I felt confident or even comfortable in my body. It had failed me and I had no faith in his ability not to do that again.

Because I had been told that infertility was likely, my new sex life led to an unexpected pregnancy before I was ready for a baby. Much later, in my early 40s, I was diagnosed with a related autoimmune disease, the cause of recurrent miscarriages in my 30s. Nowadays, as age accelerates and the years pass, I try to become more accepting of what I consider to be the idiosyncrasies of my body. There were times during that long ago summer when I feared I would never make it past puberty; now I’m just grateful that I made it this far.

The Stirrings: A Memoir in Northern Time by Catherine Taylor is published by Weidenfeld & Nicolson in hard cover£16.99