The Difficult Journey Women Face in Receiving a Lyme Disease Diagnosis

I look at my recovery from Lyme disease in two distinct passages of time: diagnosis and treatment. Two separate but equally important milestones to getting my life back. It’s painful to think back to the years I spent looking for answers, doubting myself and battling with the healthcare system to take me seriously. As May is Lyme Disease Awareness Month, I wanted to bring to light the difficult journey many of us face in receiving a proper diagnosis as women navigating the healthcare system.

I relentlessly searched for answers for over three years, saw more than 20 doctors and had every test in the book (MRI, CT, colonoscopy, bloodwork, holter monitor, x-rays, echocardiogram, etc.). The problem with these tests and the doctors who interpret them is they rely on “Pasteur’s postulate”—the “one germ, one disease” model taught in medical school. “Everyone is thinking in black and white,” said Richard Horowitz, a prominent physician in the Lyme disease community, in an interview with Maclean’s. As anyone with a chronic illness knows – it is anything but black and white.

And it’s not just Pasteur’s postulate that is working against us. History has proven that medical institutions discount the female gender again and again. From Aristotle who distinguished the superior male “form” from the inferior female “matter” to the Victorians who had a habit of committing women to asylums (regardless of evidence of mental illness), to modern day medicine where big pharma lacks the scientific approach of testing drugs separately on women and men. To dip my toe further into the waters of mistreatment I could tell you that research has shown women are also less likely to be given life-saving CPR from a bystander, prescribed sedatives more frequently than men and receive worse treatment overall when it comes to managing dementia.

As a female fighting for a proper diagnosis, you can see how the odds might be stacked against you from the get-go. My own doctor was a female and on many occasions disregarded my symptoms and told me to “get on with life” despite my debilitating symptoms. Only once did a specialist acknowledge my exhausting pursuit for answers as proof of an underlying cause “something must really be wrong or why would you put yourself through all this testing…” – exactly.

To shed some further light on this topic I asked female Lyme warriors to share their stories with me through Instagram. Here is a selection of their comments:

“Doctors told me I was anxious, stressed, depressed, overweight, and ‘maybe if I drank some water I would calm down’” — @lyme_inda_coconut

“was told it was my emotions/ in my head and to go back to my normal life, even though it was hard to get out of bed most days.” – @jbucks3

“I’ve started bringing my husband to my dr appointments because they treat me differently when he is present. When I’m alone I tend to get a lot of snarky remarks. I was even told that my Lyme disease was “stress of motherhood” by a female ID…Most of my male drs diagnosed me with stress and anxiety.” — @lymeandmehsv

“He asked my boyfriend at the time if I was “like this at home” and “lazy” and didn’t do the house chores while accusing me of seeking attention…Because the doctors thought the “woman” was crazy and trying to get out of her household duties…” — @jacquelynnefaith

“I’ve lost count of how many doctors, ER visits, urgent care visits and hospital stays over the years where I’ve been told there is really no such thing as a chronic illness. It’s mostly all psychological and there is especially no such thing as chronic Lyme or doctors would know about it. Most recently they wanted me to read a mind over matter book on controlling chronic pain. I was told “after you read this and put the techniques in effect I think you will find the pain is mostly in your mind.” I think the stigma is against chronic illness and pain. So many people now abusing medication and the system it’s like they don’t believe anyone anymore.” — @comicqueen

“Yes, I’ve had to bring my fiancé with me so many times to doctors, hospitals, because he tells them like it is. He will tell them, I would just like to see her be able to get off the couch, or not be in so much pain. And they sympathize… with him.” – @tickinglymebomb

It breaks my heart to read these comments, many of which were not included here for space. To read more or to contribute to the conversation you can see my post @chelsfightslyme.

This is not an easy problem to sum up in a few paragraphs. It reaches to the core of the medical establishment, to society’s stereotypes and is not a problem our generation will solve easily or quickly. The pharmaceutical-dependent doctor who relies on “quick fixes” and simple answers to lead their medical practice often does more harm than good in treating their chronically ill patients. And this lack of investigative medicine hurts males and females alike.

For myself, it’s not easy to come to terms with where I’d be today if I was tested properly for Lyme when I first fell ill. Or where my many friends with Lyme would be and how their missing presence has impacted our world. But it is my choice to let that pain go and to move forward into recovery.

Chronically ill patients are missing at the table of discussion about their own health. So to counter that, I encourage you to find and nurture your voice. Let’s talk about the pain, share our stories and learn to stick up for our instincts. Only you can define what’s normal, what’s acceptable and what’s right for you. Take time to reflect on what others tell you and don’t take one person’s word for it. Get multiple opinions, nurture your instincts and find support in each other. From my perspective, that’s the best way to keep moving forward, and forward is a luxury that many other chronically ill patients are still searching for.