I have been ill since I was 16 years old. I suffered with a ‘mystery illness’ for many years after removing what I thought was a tiny splinter from my leg, following a mountain hike. It was the Christmas holidays and we were living in Hong Kong at the time. I had no idea ticks could be so small and I knew nothing about Lyme disease.
At the start of it all, my immune system must have been quite strong because I was very poorly on 3 separate occasions but I bounced back after prolonged periods of bed-rest and without any medical intervention. I then had a large number of travel vaccinations and my immune system gave up on me. I spent the next 4 years visiting over 40 doctors and many of them said my illness was all in my head. Without doctors taking the time to get to know me or to find out what my natural disposition was, I was labelled with a host of mental health diagnoses (despite being extremely happy, settled and focused in my life up until I’d started feeling so unwell).
I used to tell my parents it felt like I had ‘worms in my brain’ or that I was being attacked.
My health deteriorated and I began experiencing seizures. I still wasn’t taken seriously until I consulted a wonderful, empathetic doctor in the US who diagnosed me with Lyme disease and co-infections, both clinically and with blood tests. I was so weak when I was diagnosed; it was a long time before I was able to tolerate any antibiotic treatment. I am still in treatment 6 years after my diagnosis and although I am making slow and steady progress, it has been a huge roller-coaster ride and a harder journey than I could ever have imagined.
I came back from the US full of hope and relief as I finally had a diagnosis but it soon became clear how little support there was in the UK for Lyme disease patients.
I spent hours searching for patients to connect with and eventually came across Louise Dean, a fellow sufferer of the same age. We poured our hearts out online and decided that we wanted to make a difference in the UK. We set up a Facebook group in 2013 and named it Lyme Disease UK. We were astounded by the number of people who flocked to join us, and discovered just how many people had been suffering in silence.
Together we joined the dots, and realised we were being failed by our healthcare system.
It wasn’t a case of 1 or 2 people falling through the cracks; there were hundreds of people finding their way to our group and soon enough, thousands. This spurred us on to give a voice to the UK Lyme community. As the years went by, more dedicated volunteers joined our team and LDUK grew into the non-profit organisation that it is today. I am so proud of our team and what we have achieved.
My role as Co-Founder and Team Leader at LDUK gives me a sense of purpose and a reason to get up every day.
I feel honoured and blessed to work with such a dedicated team of volunteers who are not only colleagues but dear friends as well. I am inspired daily by the people in our community and how much love and support is generated amongst a group of people who are so marginalised and stigmatised by the medical profession. I hope that as LDUK continues to grow, we can carry on raising awareness and creating real change so that no-one ever has to go through this level of suffering again.
When my symptoms are manageable and I’m not busy with LDUK, I like to spend my time exploring new places and cultures – I’m an avid traveller. I love spending time with family and friends, being on the beach, meditating, reading, writing and I dream of the day when I am well enough to get back on the ski slopes.
