I first fell ill aged 16 after pulling what I now realise was a nymph tick out of my leg, following a hike. Life unravelled as I could no longer focus on school work due to a thick fog that descended on my brain. I started experiencing swollen glands, weight loss and night sweats. I became gripped by anxiety as I could barely string a sentence together and this made me withdraw socially at boarding school. It was very easy to label me as a hormonal, homesick teenager and I was offered a hot bath and some rest in the sick bay by the school nurse.
With my head hung in shame, I ended up dropping out of school as remaining there, with my health in freefall, was no longer an option. I believe my immune system was stronger back then as after 9 months of bed rest, I was able to return to school and thrive. I thought my nightmare was behind me but the mystery illness returned twice during university, with the trauma surrounding dropping out growing increasingly.
A catalogue of symptoms emerged including crushing headaches, extreme fatigue, depression, widespread migratory muscle and joint pain. At the same time, an autoimmune thyroid condition made itself known.
Each time a prolonged period of bed rest would allow me to restart my studies (in the year below each time) and to celebrate my very belated graduation from university, I booked a trip to Africa with a group of friends. This meant a huge amount of vaccinations all in one day which floored me and led to a resurgence of the mystery illness. I never went on the trip to Africa and I never started my graduate scheme job in London, which I was so proud of securing. Instead, what transpired was 11 years of hell on earth during which there were many times I didn’t want to be alive. After all, you wouldn’t let an animal suffer like this. I spent my days in a darkened room at my parents’ house in absolute agony, unable to think or experience joy.
The merry-go-round of practitioners continued; endocrinologists, neurologists, rheumatologists, cardiologists, pain management specialists, Infectious Diseases consultants, naturopaths, homoeopaths, chiropractors and osteopaths. I knew my body was shutting down but attempts to get accurately diagnosed were like screaming into the abyss. My test results were ‘normal’ and my problems must be psychosomatic.
When the seizures started increasing in frequency and my parents grew more and more desperate with worry about their shell of a daughter, they took me, in a leap of faith, to a doctor overseas who said the life-changing words, ‘I believe I know what is wrong with you.’
It was the first I had ever heard of a possible Lyme disease diagnosis but I hadn’t grasped that it was just the beginning of a very long road back to health. I spent the next 7 years rebuilding my immune system and trialling many experimental treatments (some of which weren’t helpful at all). It was a roulette and a lottery at the same time.
In 2019, I finally began turning a significant corner and although it had been a marathon and not a sprint, I could see some light at the end of the tunnel for the first time in over a decade. I never thought I would see the day where considering remote, part-time work was an option. It was a process of re-believing in myself and accepting that I did deserve to earn from my work at last, as I could finally commit to something and be reliable.
By 2020, my part-time, remote role turned into a full-time position and I was able to move out of my parents’ place and into a house by the beach on the South coast, right before the pandemic hit. Covid-19 was a surreal experience as the whole world entered a lockdown I felt I had been in as an individual since 2008. The difference was, the rest of the world was experiencing the kind of restrictions many chronic illness sufferers go through alone.
My health continued to improve as my immune system got stronger, although I know I will always have to manage fatigue and stress levels to avoid relapse. My life has changed dramatically. I am able to hike long distances with our two dogs, travel, socialise, work full time, and chair the charity Lyme Disease UK in my spare time.
Co-founding and chairing the charity, which started as a support network in 2013, provided a sense of purpose and a reason to open my eyes, even though the majority of my volunteering was done from my laptop in bed. Connecting with fellow sufferers and volunteers, who quickly felt like family, kept me sane as did my parents’ and family’s unwavering belief that I would one day recover. Most importantly, I can have fun and feel joy again.
I truly hope my journey provides some hope that no matter how dark things get, there are success stories out there. I never believed for one second that I would be someone with one to share.