May is Lyme Disease Awareness Month, EDS Awareness Month, and Mental Health Awareness Month. In honor of these, I share my story with you.

I was officially diagnosed with Chronic Lyme Disease in October 2021, but had a significant onset of symptoms since my traumatic brain injury (from a car accident) in October 2000. It took me 21 years of doctor’s appointments, testing, restrictive diets/nutrition plans, treatments, canceled plans, and missed work to finally get an answer to the progressively worsening symptoms.

Twenty-one years of not being believed... of feeling like a medical anomaly and mystery that may never be solved. I thought getting a diagnosis would not only finally offer some answers and help me understand what was happening to my body, but might actually finally validate my experience. Maybe I would finally be believed.

I quickly realized Chronic Lyme Disease was actually a pretty "controversial" diagnosis. There was still little validation in the medical world for people who were either diagnosed much later in life, or treated for acute Lyme and never recovered. The most common testing often presents with false negatives and fails to look for all the variants (there are over 20). The most common antibiotic treatment fails so many patients, yet is still promoted as the primary treatment. Many cases are missed or misdiagnosed because the patient didn’t remember ever being bitten by a tick, or never presented with the common bullseye rash. Neither of these things need to be true to contract Lyme.

Because there are so many variants, there are countless ways symptoms can present themselves. This makes treatment far more complicated and non-linear. What I was hoping would bring answers and a clear path for treatment, only brought more questions. I have tried many rigorous treatment plans and still struggle with worsening symptoms.

Though I have also exhibited symptoms for hEDS since childhood (hypermobile Ehlers Danlos Syndrome), I have not yet sought out the official test and diagnosis. My chronic illness journey has been so exhausting; causing extreme burnout on top of my symptoms, and serious financial strain.

I share my story because I know other chronically ill folks have had their own very complicated journeys and struggle to be believed, both by doctors, and by friends and family. The chronically ill life can be extremely isolating, and adds to our mental health struggles... feeling hopeless that things will ever get any better, that any treatment will actually work (fear of getting our hopes up just to have them dashed once again). It can be exhausting to have so much of our focus and limited energy on treatment, and explaining ourselves to people who don't understand (only to not be believed, once again).

If you are chronically ill, I want you to know, you are not alone. You deserve to be believed. You deserve support. You deserve moments of joy and play and fun that have absolutely nothing to do with your illness.

If you are not chronically ill, please be willing to listen to people in your life, or those you encounter in the future who try to share their lived experience with you. Their chronic fatigue is not your “tired.” Their chronic pain is not your occasional soreness. Their depression is not your “down day.” Their symptoms are complex.

We need your compassionate presence and to be believed far more than we need your advice. We need to know you are thinking of us when we disappear for days/weeks/months on end because our symptoms are so debilitating.

If this resonates with you, please share this post, or even contact me and share your story if you are comfortable doing so. Let's practice holding space for one another and help spread awareness.