Ten months have gone by in the blink of an eye. My life remains at a complete stand still. Rather, this nightmare continues, day in and day out, like that funny movie “Groundhog Day.” Except – this isn’t funny. This is real. And I want to wake up from this nightmare and return to the land of the living, which is why I torture myself and visit yet another doctor. Hopeful this one might be “the one” who figures it out. I sit in a rheumatologist’s office rattling off my list of never-ending bizarre symptoms, only to be met with rolled eyes and skepticism. Sadly, this isn’t the first time I’ve received this response.
I might as well ask one more time, “Are you sure this isn’t Lyme disease?”
The doctor barely blinks at my question. “Sounds more like reactive arthritis,” she replies, “but I’ll do a Western Blot too.” I politely smile. Thanks for humoring me.
Not even a year ago, I was about to be in her shoes. I was a first year medical student when I was struck down by a mysterious illness with debilitating symptoms. Bone-crushing fatigue, ears ringing so loud I couldn’t hear the person speaking standing next to me, hips so stiff rising up off of the toilet became a challenge – this became my daily life. My condition forced me to withdraw from school and move across the country to live with my family to help care for me. I lost my freedom, my health, and I had to put my career on hold indefinitely.
Nowadays – well I’m that patient the office staff whispers about. They assume I’m young and I look healthy, I must be making it all up. Right?
The doctor hands me a script for blood work and says she’ll call if anything comes back abnormal. She doesn’t seem very confident. Twenty-two tubes of blood later – I’m ready to faint, but I walk out the door with a glimmer of hope that maybe something will be revealed by those ruby-red tubes. At the very least, I’ll give this doctor credit for being thorough.
Two days pass, and I see a voicemail from an unfamiliar number. I don’t get too excited – probably just another unpaid medical bill. Subsequently, no one has figured out what ailment has been affecting me for the past 10 months, so in my insurance companies’ eyes, there is nothing wrong with me. No diagnosis. No coverage. No treatment. I’m forced to pay out of pocket to visit alternative health care practitioners, functional medicine doctors, and naturopathic physicians. What choice do I have? How much is your life worth to you?
I press play and hear the words I’ve been searching for, for what seems like a century, “We found something.” Except, I couldn’t believe the words they were followed by.
“I wanted to call and let you know all your blood work came back normal, except you came back positive for Lyme disease. I didn’t think it was Lyme, but I guess it is. Actually, we get false positives, so this might not be what is causing your symptoms.”
After seeing over 20 doctors of varying specialties, backgrounds, and philosophies, five ER trips, one week-long hospital stay, colonoscopies, endoscopies, and countless blood work – all revealing nothing… but we get a positive Lyme disease test and assume it’s a false positive? This is the epitome of what is going wrong in health care in the United States, and what I hope to help change by sharing my story.
First impressions aren’t everything. Just because someone looks a certain way, doesn’t mean they aren’t as sick as they say. Just because someone is a certain gender, doesn’t mean they just want attention. Just because someone holds their head high and smiles during an appointment, doesn’t mean they aren’t struggling on the inside. Just because someone is “too young to have that,” doesn’t mean they are lying. Just because the diagnosis the doctor originally assumed the patient would have was incorrect, doesn’t mean a patient should go without treatment because someone’s ego is bruised. This is the reality of getting a Lyme diagnosis in our country, and this isn’t the way it should be.
We need to make a change in the way health care providers treat and connect with chronically ill patients. To me, that starts with the education we are giving to our physicians and nurses. We need to teach practitioners to be more understanding, more compassionate, more accepting, and not to be afraid to think outside of the box or to make an unusual diagnosis. Patients with severe debilitating symptoms should not be familiar with eyes being rolled at them. They should feel comfortable telling their doctor what is honestly going on, and should not be met with a blank stare, harsh words, or referrals to a psychiatrist.
We can’t see a fractured hip or a cancerous cell in someone’s thyroid, why would the pain and fatigue someone suffering from Lyme disease experiences be any different? Just because you can’t see something – doesn’t mean it doesn’t exist. Physicians need to start listening to their patients, and not making assumptions based on previous experiences or outdated medical textbooks.
Now, I’m not saying all health care providers are like this. For every 10 doctors I saw this year who essentially couldn’t waste their time figuring out what was going on in my severely compromised system, there were a few who were worth their weight in gold. They took the time to listen to my entire history, to think of other possibilities, or to refer me to someone who might know more about a topic when they were out of their comfort zone. They paused during their busy day and felt it was a necessary part of their job to tell me, “It’s going to be OK and we’ll figure this out together.”
That is the type of person that should be the majority of physicians, not the minority. Providing care with humility, integrity, and respect is part of the job. These are the doctors the next generation of health care providers should be modeling their careers after. These are the types of doctors that all patients – chronically ill or otherwise – deserve to be treated by.
We desperately need more doctors like this in our country.
I hope one day to be one of them.
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Nicolette is an aspiring physician documenting her journey healing from Lyme Disease. She received her B.A. in English Literature and Psychology from the University of Miami and has always enjoyed writing and sharing her story.
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