Late stage Lyme disease can often be an invisible illness. Managing debilitating symptoms whilst looking well on the outside can be hugely challenging for sufferers. We want to help people understand that it is possible to be very unwell with Lyme disease and co-infections, even though we may look well on the outside.
Thank you to all the members of our patient community who shared their thoughts on living with Lyme and what it is like to suffer with an invisible illness. We see you!
I suffered very badly from undiagnosed and untreated Lyme disease for over a decade before receiving effective care. However, throughout the majority of that time, I looked ‘well’ despite being in excruciating pain and being unable to think clearly or see straight. People would say ‘but you look so healthy’ which was never much consolation when I felt like I was dying on the inside. Although I’ve recovered enough to live a full and productive life, my health requires constant management, I have very poor tolerance when it comes to stress and weeks when I’m on treatment can be tough going. It’s so important to make people aware that invisible illnesses are very real but can make people feel misunderstood, isolated and fraudulent”
I was very nauseous, felt like I was on a boat the whole time, and it was such a struggle to keep standing with my legs being so weak and the ever present neuropathy, with a smile on my face to boot. I don’t think anyone would have known there was anything wrong with me from looking.
My kids were so excited that mum was actually joining them on an outing. I’m glad I made the effort.”
“This is me with my fiancé, Gareth. What most people wouldn’t understand and see here is the enormous effort and energy it takes to do something others find very easy. It takes me so long (even weeks before) to prepare to go out for something simple as a meal out and even then, I have to cancel and rearrange due my illness.
I suffer with exhaustion, fatigue, joint pain and nerve pain to name a few. What’s important to understand is that part of me really needs to feel ‘as normal’ as possible. On the surface, I do look well in the photo but hidden/invisible illness is REAL and DEBILITATING! I’m so pleased I can contribute to this very important campaign”
“This is me and my husband in London, November 2019, around the time when we realised that we were actually both affected by Lyme disease! We tested positive (mine weak, husband strong positive), with Armin in February 2020 after negative NHS Elisa’s, despite husband having bites with embedded nymph ticks and EM rashes summer 2018 and 2019. It’s been a roller coaster year or so, and a steep learning curve, hampered by Covid, but we are still positive and still moving forward. We think I have been infected since 1994. We will never give up and will do our best to help others too.”
“This is me and my lovely mum just before I started treatment for Lyme. I couldn’t stand for long at the time and was spending a lot of time in bed feeling brain fogged and fluey. I’d lost a lot of weight in the year running up to this and looked really well.”