White Hearth Coffee Blog

My Lyme Soap Box

It has been eight years since I was diagnosed with chronic Lyme. Eight years since the hospitalist looked at me and smirked because he knew the reason I stopped being able to walk more than a half a mile was because I was “stressed.” Eight years since I went through 20+ doctors until I found one who looked me in the eyes and saw that I wasn’t faking it, that my pain, struggle and burden were things I would have rather never touched.  Eight years since I received the word that my life would become a series of pills- yes, sometimes even 50+ pills per day. Eight years since I learned that I wasn’t invincible and that a single moment should never be taken for granted. It’s been eight years since I learned  that sometimes the system fails us, sometimes we get lost in transit and at the ripe age of 21 have to learn what  it means to advocate for ourselves (with help from a rather supportive hubs). 

It has been almost four years since I was told I was in remission. Four years since I received word that I could stop taking my endless list of pills. Four years since I learned that I wouldn’t have to give myself penicillin injections every week. Four years since I discovered that I was infinitely blessed to receive back my health in spite of the bitter years I spent going through Lyme treatment.

Over the course of my remission I’ve found that I spiral at least a couple times per year. Sometimes I open my medicine cabinet and look at my pills that I can’t get rid of because I know they’re too expensive to have to buy again if it comes back. Sometimes I have to deep breathe if I’m around someone with the flu because I will never forget the memory of being told that Lyme loves viruses and could come out of hiding if the immune system is bogged down. Sometimes I wake up with a headache and wonder if the disease is starting over. And sometimes I have to push myself a little harder because my body has never been the same since my treatment. 

Mostly, I pretend that the years of treatment never happened. And most of the time that works for me, until it doesn’t. Until the weight of my past catches up with me. Until the healing that is still to happen screams to be received. Until I realize that there are still so many healthcare professionals who think chronic Lyme isn’t real. There are so many who think the years I spent swallowing pills were in vain or in the hopeless pursuit of attention. But I can tell you this, being able to run a marathon this past year wasn’t in vain. Being able to work full time, go to school on the side and exercise, most certainly, was not in vain. And telling my truth to all who care to listen won’t be in vain because I  know more than a few people who still suffer from this silent debilitating disease that some clinicians deem as  “unreal.” 

I’m not one to hop on soap boxes until I gather all the facts. I spent many years gathering evidence that chronic Lyme disease was real. I felt the pain coarse through my body on a daily basis, perceived the weight of weakness surround my limbs and felt the gravitational pull of the loss of my life as I knew it. I felt the loss of memories as they unraveled from my grip. I sensed my reality being pulled from me as I floated through each day. Tell me what you want about Lyme, but your opinion will never speak to my experience which I find to be the most tangible evidence I have ever seen. Lyme is real. Lyme is debilitating. Lyme is all consuming and has the potential to destroy bodies and lives. Lyme is an unstoppable wave of destruction and it is about time we do something about it. 

Though the insurance companies will never repay the $1200 per month we spent on unanswered claims and the support from my peers will never replace the disbelief I received from so many clinicians throughout the years, I know my truth, and I’ll keep fighting for it to be heard.

This blog post was published as a result of reading this amazing piece by Elena Delle Donne who also suffers from Lyme disease. Her article reminded me of the work still to be done in the Lyme world and also triggered some thoughts that needed to be shared, hence the previous article. 

Peace, love and WHC,