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A Letter to All the Doctors Who Dismissed My Disease

Since becoming sick almost seven years ago, I’ve probably seen 70-80 doctors. To be fair, five or six of them I really like, and those few actually listened, cared and had respect for their patients. However, a majority of the doctors I’ve seen have completely turned their backs on me and failed me as a patient. This letter is to them.

As someone with Lyme disease, I cannot even begin to explain the sense of abandonment and frustration Lyme patients may feel on a daily basis when dealing with the medical community. I wanted to give examples of the kind of harmful rhetoric those patients face, as well as personally address a few of those members of the medical community below:

– To the doctors who have said, “Lyme doesn’t exist in California” or “I don’t believe in Lyme,” I would urge you to do more research because those statements are simply incorrect. In 2014, Stanford University published an article stating that Lyme disease was in fact prevalent in California. The facts do not cease to exist just because you choose to ignore them.

– To the doctor who told me “I can’t treat you for Lyme or I’ll get fired,” it’s going to take certain people going out on a ledge to dismantle the status quo. Nothing will change if everyone is complacent. Besides, in California there is a 2005 law (AB 592) protecting doctors from losing their medical license when prescribing long-term Lyme treatment, so your argument doesn’t entirely hold up. It’s just an excuse to not treat me, turn me away and defer the responsibility to another doctor by letting them handle it.

– To the doctor who said, “Well, the good news is: if it were going to be fatal, it probably would’ve killed you by now” – I’m sorry, but is that supposed to be comforting? Please work on your people skills.

– And finally, to the doctor who said to me, “You could get well if you really wanted to,” (insert sarcasm here) yes, because what I really want at 20-something years old is to be at doctors’ offices and the hospital, going through painful procedures and essentially losing what should be the best decade of my life. Not to mention feeling like a burden on my family, being in constant pain, having seizures, etc. And I’m guessing the countless tests that have shown abnormalities and proven my physical disability are irrelevant to you? I can’t even argue with that ridiculous logic… so I’m not going to try. All I will say is that you hurt me with that comment. I remember tears streaming down my face, clouding up my sunglasses, on that long drive home as I struggled to understand how you could possibly say that to a person who had been so severely ill for five years. I was not only frustrated and upset that you said something that horrible to me, but I was also upset to think about the number of patients who must come to you desperate for help only to be treated that way. My heart continues to break for those patients.

So, to those doctors I mentioned above, as well as the many others I didn’t have room to address, I say this: when it comes to the fight against Lyme disease, you are going to be on the wrong side of history. No one has ever accomplished extraordinary advances in medicine or research by thinking inside the box. It is time to shift away from the outdated paradigm regarding Lyme recognition and treatment. And most importantly, it is time to start believing your patients.

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Photo via utah778 on Getty Images