I can only imagine what you thought when you heard the words “Chronic Lyme”. What criticisms your medical mind jumped to, believing your license as a pediatrician gives you expertise over all. You seemed surprise that after you “cleared” me of illness, assured me there was nothing wrong, I did, in fact, continue my search for health and didn’t take your lack of answers for a solution.
But it should tell you something, that after you turned me away and inferred that it was all in my head, you didn’t give me or my illness another thought in all these nine months. Nine months, in which you celebrated Christmas with your family and took a spring break trip. But nine months, in which I fought for my health and my sanity every day, trying any means possible, medical or otherwise, to be myself again. But no, not even once did you sit back and just wonder for a moment, how is she doing?
Did you really just expect me to give up? To sit around for months accepting that my physical symptoms were a manifestation of depression or just a need for more sleep? That after one appointment and a couple negative test results, I would resign myself to constant pain and suffering, just because you told me my concerns had no merit?
Before this whole saga began, I was naively trusting of the medical system. But why wouldn’t I? I never had a reason to doubt it. I grew up knowing that if I was sick, I would go to the doctor and I would get better, whether it came from antibiotics or self-care in the form of rest and fluids.
My obsession with the medical show Grey’s Anatomy only further feeds the delusion that the medical system is 100% for the patient. Rarely is there a storyline that ends with an unfindable disease or a laundry list of negative tests. And when there is, the doctors hold the emotional patient in their arms and promise to keep looking, doing anything and everything it takes to find the cause of their pain. Oh, and don’t worry, insurance will cover the insane costs of medical care. This portrayal is so far from reality.
Thankfully, neither I nor my parents decided to listen to you. And it is too bad. After years with you as my pediatrician, after you walked me through an eating disorder, migraines, and mono, you were one of my providers I trusted the most. I respected you and your opinions. But this time, we had no choice but to circumvent your roadblock. Because while you told us what you thought it wasn’t, you gave us no clue to what it could be.
So we became our own investigators, traveling from ENT to cardiologist to neurologist, all in the hopes of finding someone who cared enough to join the team. And after what seemed like eons to me, the victim of it all, we did. The first time I met my Lyme doctor, I felt like someone finally believed me. A member of the medical community listened and understood and was committed to helping me. He had the answer.
Unfortunately, the longer I was a part of the Lyme community, the more I realized that my dismissal or one like it was not a rarity. Thanks to the CDC and a whole load of other bureaucratic crap, Lyme, its patients, and the wonderful doctors who commit their careers to fighting it are persecuted and shunned. Because Lyme is a silent epidemic and a horribly misunderstood disease, it is still denied by the majority of the medical community.
In the months since I began working with this doctor, I have begun to feel relief. Slowly, my body is fighting back and I feel small improvements, symptoms becoming less and less until they fully disappear. It took me a long time to begin to trust the medicine and accept that after all the uncertainty, I had a diagnosis. Even when I finally had positive test results, confirming I have Lyme Disease and two of its co-infections, Bartonella and Babesia, sometimes I would still question the recovery plan I was following. And, now for the first time in months, I am beginning to feel happy. I feel like me again.
I know that because of the treatment I have received, the collection of three antibiotics and a whole host of natural supplements, the 42 pills I take a day, the PICC line that is in my arm, that I am getting better. And I will fight anyone who says otherwise. But then you had to go and burst my bubble. To kick me back down a couple notches and replant a seed of doubt in my mind when I had just ripped that awful weed out.
Which is why I am writing this letter to you.
I don’t know why you can’t accept my treatment plan or why you feel the need to badmouth the doctor who is a saint in the mind of a Lymie. Is it because he was able to give me an answer and you couldn’t? Because this shouldn’t be about pride. It should be about me, the patient.
So when we feared that my sister, exhibiting some symptoms, might be suffering the same disease and we came to you hoping for some understanding and a script for 28 days of doxy, we weren’t looking for your commentary or your thoughts on the decisions I made about my body. You were excluded from the decision making team when you doubted my sickness.
And it seems that the same doubt and almost hilarity is still very much apparent in your opinion of the treatment I chose. It does not seem to be out of concern for me, but almost pity that you believed I was sucked into some traveling salesman’s pitch and channeled my time and money into some counterfeit operation.
Instead of regarding my doctor as a peer in medicine, you disapprove of him and his methods. You call him a loon, because he can actually read the signs and believes fully in Chronic Lyme. You assume that he talked me into IV medication because, “he uses it on everyone,” when really, I was the one who asked for the powerful drug.
When we show you the positive test results, the evidence that supports my treatment, you laugh them off. You say “you can’t trust that lab. They give everyone positive results.” Is it really some large conspiracy? Because maybe it’s the fact that there are 325,000 new cases of Lyme every year, plus the thousands of others who go undiagnosed.
And once we realize we’re not getting anywhere with you and we will not end the appointment having convinced you of Lyme’s legitimacy, we bring our discussion to a close. You say, “I’ll just keep my opinion to myself.” And by doing so, you have just succeeded in giving me your opinion anyway. It is the smug and more knowledgeable than thou attitude that clearly says, “I think you’re wrong.”
I can handle this. I can ignore your continued disapproval and follow the path to recovery that I know to be right. But this is not just about me.
This is about all the other children you call your patients. The one’s who are not as informed, not comfortable challenging you, and will take your words as fact. They won’t go against your advice. They won’t look for their own doctor when you won’t refer them to an infectious disease expert. How long will it take for them to be diagnosed? How much will their condition have to deteriorate before they are given the help they deserve?
You are depriving them of the health care they need.
And what I think is this. What if it was your child laying limp on the couch month after month? If it was your son who couldn’t walk to the bathroom without help, would you give up? If the pain in your daughter’s head was so intense she couldn’t help but to cry, would you take no for an answer?
When you make it personal, does it change your position?
I am thankful everyday that I listened to my intuition and demanded more for myself. That we didn’t stop with your opinion and searched further.
Here is my opinion. You can learn a valuable lesson when it comes to your bedside manner. Don’t bad mouth what you don’t understand. And, next time, you really can keep that opinion to yourself.