Author: Sairy Franks
In honor of Lyme Awareness Month, I wanted to share something that has been on my mind and heart for years. People often complain to me about their family members or friends who have Lyme, saying that they are too negative and should be more positive, like me. Please keep in mind that I have had an extraordinarily supportive community across time zones and continents, as well as a family that would do anything for me. Even with that support, I have had many low points and had my own bouts with heart-shattering grief, fear, depression, trauma, struggle and desperation that pushed me to speak or behave in ways that weren’t true to myself – and this usually happened behind closed doors with the people I trust most. And let me tell you, it is devastatingly painful to witness yourself doing this. Experiencing chronic illness (especially when it is life-threatening) is enough to make anyone behave in ways that can’t be understood by others, not to mention that Lyme and other tick-borne diseases can cause mental illness in some people because of the impact on the brain.
Many of us wake up every morning feeling as if we are hung over, still drunk, and had just been hit by a bus – all of this before even opening our eyes. Imagine that for a moment. Then imagine that this has happened every day of every week, every month, and every year for a decade or decades. That you experience this from the moment you wake up until the moment you go to sleep. The thoughts of hopelessness, helplessness, that you are to blame and that you are a burden take over. Then imagine that society and most doctors don’t believe you are sick. Imagine watching your health decline. Imagine being retold story after story of folks who have lost their lives to Lyme. And finally, imagine that those you are closest to expect you to behave according to what they believe is appropriate for you, having never been in your shoes – or your bed rather, where you spend most if not all of your time.
I write this not to guilt anyone, but to share a perspective. Please be gentle, both to those struggling with Lyme and to their care providers. I trust you will do your best and that you will trust that those who are dealing with immense physical, emotional and spiritual chaos are also doing their best under unspeakably difficult circumstances.
Thank you for reading. I am in community with a lot of folks in the thick of Lyme struggle right beside me for whom I care deeply and want only the very best for. Additionally, I believe that this message applies to everyone. We can all use the reminder to be gentle with others as well as ourselves – sometimes the most difficult part. We are all in this together. Handle we with care.