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Story 150

How has Lyme disease affected your life?

My name is Stef, I’ve had Lyme disease for 7 years now, after a strange rash (that I thankfully photographed and now know is an EM rash) was misdiagnosed as ringworm in 2015. Over the years I kept getting sick, but the things were so disconnected.. debilitating days—long migraines with visual effects, tachycardia and heart palpitations, energy crashes and a thyroid attacking itself—were the first symptoms that popped up down the line in 2016, my first year of university. My doctor dealt with each issue separately and it was all unknown as to the cause. Then in my second year, my body just betrayed me, with debilitating fatigue and chronic pain, periods gone completely and neurological bits and bobs like tremors, brain fog and memory loss and eventually seizures. I just about finished my second year and just as I was starting my third year, I had a 2-hour seizure in Paddington station. I was diagnosed with M.E., Fibromyalgia, Non Epileptic Attack Disorder and Functional Neurological Disorder. I had to fight with doctors who dismissed me and learned a lot about patient advocacy.

I had to move home to be cared for, as I could no longer look after myself, which broke my heart. Piecing the symptoms together with my medical history, I came across the rash picture which, along with my symptoms was enough for a GP to consider Lyme Disease and start me on a course of Doxycycline immediately. The relief was immense. All seemed well until I would finish the course and everything would start up again. My pain was hefty and my seizures were daily. My GP kept me on Doxycycline for longer and longer periods, but I would always relapse. We had no idea what to do, infectious disease doctors said I should be cured, but I kept going in circles.

Lyme Disease UK organized a talk with Dr. Jemsek in London, which I attended with my mum and uncle, he was at the top of my list of international specialists treating people like me. I asked about my case and took as many notes of recommendations as I could to my GP. We started me on some stabilization medications for my nervous system and I started fundraising to see Dr. Jemsek in America for specialist treatment.

I’ve been in treatment for 3 years now and am grateful for my progress everyday. I can read again! When you lose the ability to read, as someone who loves learning, it’s devastating so I’m most grateful for that. I haven’t had a seizure in 2 years! My pain is under control besides suspected Endometriosis (I’m on a waiting list for a specialist to investigate that), and my fatigue is better than it was by a long mile. I have a carer who helps me live a bit more independently, with the tolls of treatment and all the detoxing I have to do. I’ve learned a lot through the wider disability community online and have unlearned so much toxic internalized ableism. You have to grieve the loss of your old self and I’ve managed that really well, I just focus on who I am today. Every year I try to get involved with Lyme Disease Awareness online, but I’ve always been too sick to manage making a difference in my community in person (besides my fundraiser in 2019 which doubled as an awareness event). This year I’m finally able to do some things locally and help more people avoid having to go through what I’ve been through.

I believe in the power of education and activism, I believe in the power of mutual aid and I believe in the power of marginalized communities. Today I work on learning sociology, philosophy and getting back to my practice of textile design. I’m still in treatment and have some way to go, but I’ve come such a long way. I love going outdoors in nature in my power chair (mobility aids are freedom) and spending time with my partner. It’s been a hard few years but I enjoy what I can, when I can.

My advice is listen to your body and work with it, not against it. Not everything will work for everyone. If something a doctor suggests is harming you or not working for you, you are allowed to say so. Also keep notes of everything, even if it’s in the form of videos, just to look back on and see how far you’ve come, sometimes you need that reminder.

What inspires you?

the power of a collective.
mutual aid.
communities helping each other.
Not one quote in particular but I’m a fan of Bell Hooks, Noam Chomsky and Albert Camus to name a few who inspire me.

Hang in there, 
Stef xxxxxxx

If you can, please donate or share Stef’s GoFundMe here. to help them travel from the UK to Washington, DC for their next doctor’s appointment and raise funds for Lyme Disease UK.

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