The Lost To Lyme campaign aims to give those, who often feel alienated and ignored, a platform to tell their story. We hope this will highlight the emotional, physical and financial impact chronic Lyme disease can have on ones life due to lack of awareness and supports.

We are gathering stories from people who have lived with Lyme either as a patient or as a parent of a child with Lyme or as a carer of a spouse/parent with Lyme. We are aware that not everyone has a Lyme diagnosis, for some it is co-infections but for now we will call it Lyme. 

You may start by describing how and when you first became ill and how you were received as a patient. The middle part of your story may describe how you have felt living with a disease that is not recognised fully. You may discuss how this illness has impacted your sense of self, your relationships, your goals,  etc. If you wish you can end with a description of how you are now and what you hope for your future.

There is no right or wrong way to tell this personal journey, a poetic version is as welcome as a narrative. This is your story.

These stories will help raise awareness for other sufferers and carers. Our own stories often feel less burdened when we can share them but also in the empathy of hearing another’s.

If you would like to take part, we deeply thank you for your time and bravery in sharing.