I sent a letter to my former doctor this week. I wanted to let him know I found the cause of my hypochondria.
To remind people, I had been pretty sick for three years. Longer really, but it was only a daily thing for three years. I had breathlessness and debilitating exhaustion. My doctor told me it was because I was overweight and I needed to exercise. But there were days I couldn't walk across my living room without getting fully depleted and out of breath. I told him that and he told me to exercise harder. I told him that one day, while exercising harder, I collapsed and thought I was going to die. That's when he called me a hypochondriac.
Let's face it, by the time your doctor calls you a hypochondriac, they've been thinking it for a while. Maybe he thought I was a hypochondriac because I would come in and say
"could it be my hormones?", "could it be my heart?", "could it be
glandular?" I did that, of course, because I was looking for an answer to a very real problem I was having. And each time he would tell me it wasn't the things I asked about, I'd go home and google in hopes of finding an answer. I was afraid. I couldn't breathe right. And I thought I was doing my part as a patient who was motivated to get to the bottom of the issue. Until he called me a hypochondriac, I didn't fully realize he wasn't looking for answer and was never going to help me. That's when I finally left that doctor.
It turns out that my hypochondria was actually asthma. Because I never coughed or wheezed, that diagnosis was ruled out pretty early on with every doctor I saw. So I get why it was hard to find the cause of my issue. But my doctor didn't even try. He had it made up in his mind that I was a lazy fat person who was making excuses. What was really happening was that my airways were closing up on me when I tried to exercise or when I encountered allergens and, since I had no medicine, I was never quite able to recover before the next time I would be triggered. So I was constantly in some degree of pulmonary crisis. And the more I complained about it, and the worse it got, the more my doctor dismissed me.
I was in a no-win situation with extremely high stakes. Being improperly treated or untreated is what kills almost every one of the nine people each day who die of asthma in the US. They are preventable deaths caused either by patients who don't take their medicine, patients who never go to a doctor or doctors who just plain get it wrong. Most of them are women. And if you happen to be a woman, I don't have to tell you that our complaints are frequently dismissed as exaggeration or being overly emotional. I got the crap numbers in the lottery on this one because I not only got a doctor who got it wrong, I got a doctor who was insulting about it and gave me advice that put my life further at risk. Ultimately, though, I won because I'm alive to blog about it.
So, in light of all that, I felt he needed to know. After listening to my lungs and heart, he diagnosed me, literally, as a big fat liar. There would be no other option to consider, and no specialist to send me to, even though he'd known me for years and I'd never really had any complaints up to then. I get that a lot of patients come in with wild ideas about stuff when they google. But to call a patient a liar when the truth is that you just don't have the answers is not just wrong, it's dangerous. For every hypochondriac out there, there's at least one person like me who needs to be heard and believed. When we parted, he was certain he was right about me. And I wanted him to know really just how wrong he turned out to be.
I debated sending the letter. What was I trying to accomplish? I asked myself if just writing it was enough. It was certainly cathartic to write. Then I thought maybe, if he read it, someone else wouldn't be given deadly advice by him just because they were overweight, a woman, had the audacity to google for answers or because his ego was too big to consider he was wrong. Then I thought that maybe he wouldn't read it. It was pretty long...haha. Then I thought about how many nights I laid in bed, unable to sleep because I was composing this letter over and over again in my head. Then I thought, no he needs to know it wasn't my imagination and his smart-ass attitude and poor advice (that me and my insurance company paid for) could have cost me my life. So I sent it. For my own sanity. And I'm glad I did.
It's not about missing a diagnosis. The next doctor missed the diagnosis, too. It's about the way he treated me. It's about me telling him over and over again what I was experiencing and him not listening. It's about calling your patient a hypochondriac when their lungs are seizing up on them on a daily basis. When a person in authority tells you over and over again that your reality is screwed up and that their reality is correct, that's abusive.
And my mistake was listening to him, taking his advice and, while not really believing him, spending far too long considering his theories and thinking he was on my side. He's a highly rated doctor and I gave too much credence to the voices outside of me. When you seek advice from doctors, you're supposed to trust them. But then you're also supposed to be your own advocate. And the space between those two is very hard to negotiate. I admit, there are many situations in which I've listened to the words of others to my own detriment. This man had been my doctor for years. It took me a while to catch on.
When I think of all the times in my past that I never sufficiently stood up to the bullies and abusers in my life, I'm sad. Part of it is that, in the moment, you find yourself defending yourself, instead of returning the jab and letting them feel what it feels like. The thing about being empathic is that you usually avoid conflict, but when you contemplate your attacker, you're able to clearly see their pain. You know what it's like to have your pain thrown at you, so you hesitate to throw it back. And you see things that could devastate the other person, especially if they live in a bubble where all the people around them are paid to act like they're infallible.
Having insight that can wake the unconscious is a big responsibility. Normally I would caution against using it, because it's not our business to do so. I'm a big fan of turning the other cheek and taking the high road. Their path is their own, when they want help they'll ask for it and all of that. But in being that way, I never confront the bully in my life in a way that lets them know I see what they're doing and it's unacceptable to me. So while I exercise the part of me that moves beyond things and forgives and doesn't need to assert myself in order to make a point, I never really stand up for myself. And that's a muscle that needs to be exercised, too. It's a consequence to "taking the high road" I hadn't considered. I felt my voice needed to be heard, hopefully, ultimately, for the good of all.
I'll be honest, in the past I've had some fear around standing up for myself. Whenever I have, I have either gotten in trouble or have felt like I will get in trouble. I suppose it's an irrational fear, but I have experienced a couple of scary moments in the wake of defending myself. And I suppose if I look back, my parents were kind of absolute rulers. There were times you were better off not defending yourself.
The nice thing is that this is one of the first times I don't feel afraid of the repercussions. First of all, my letter was very respectful and, dare I say, much kinder and more generous than most people would be. And second, I feel totally within my rights, and even my responsibility, to send it after what I've been through. He needs to know all this before he gives deadly advice to another patient because his ego won't allow him to consider the patient knows better about how they feel than he does. And if he gets huffy and misses the message, at least I've done my part. Everyone makes mistakes. But you do need to know you've made them in order to learn from them. And he had no idea. He was still thinking he was incredibly clever for outing a hypochondriac.
Part of the way bullies and abusers work is that they keep you constantly on the defensive. And when you're in a position of having to defend yourself, you're not focusing on the real issue—the other person's systematic abuse of their power and privilege in your life. They count on you staying on the defensive and not seeing it. And if you start seeing it, then they up the ante on their abuse.
As I get older, all of this becomes clearer and clearer. And I get little more bully-proof. And most of the time I just walk away and give them no satisfaction. And other times, I give them just enough mirror to see their own reflection. Doctors find you at very vulnerable times and they decide what tests you take and what specialists you see, so they have to be very careful of how they wield that power. And I'll admit part of me wants him to feel bad. But part of me wants him to learn from this so that nobody else goes through it. Part of me just wanted to stop composing that damn letter in my head at 4am. And part of me wants to move past the "victim" phase of my recovery—the part that mourns how much and how much longer I suffered than was necessary.
Those who use their power to harm or intimidate others are powerless within themselves. The more I grow and appreciate my own power, the less I fear them and the less power they have over me. Until you've been deprived of oxygen and energy for years, somehow eluding death while your doctor treats you like you you're making it all up, you don't really understand how incredibly powerful you are. I shouldn't fear the bullies. The bullies should fear me.