When I was 20, I developed a permanent, stationary blind spot in my field of vision, so I had to get one of those scans where they inject your blood with dye and examine your eyes. (Which was not fun, BTW.) They determined I had something called Central Serous Retinopathy, and that the spot was permanent. It sucks, but thankfully it’s off to the side a little and not directly in my center of vision, otherwise the last 17 or so years would have been significantly more problematic.
ANYWAY, that’s not the point. The point is, I developed this spot while taking Prednisone for the flu. During the last 17 years I have asked at least 3 doctors (including eye doctors) whether Prednisone could have caused my little blind spot, letting them know the drug insert even warned of potential eye problems. Well, I KNEW it caused it so I TOLD doctors rather than asked, and every single one of them dismissed me with “That’s not possible.” Actually, I wasn’t quite so shitty about it – I told doctors when they questioned why I won’t take steroids anymore. (Of course, telling them this made me seem crazy, a concept which even pre-dates my FQ experience.)
Well, I had to go to the eye doctor today for blepharitis that will not seem to heal, and he rattled off a handful of possible causes of Central Serous Retinopathy. Guess what? Steroids was one of them.
I almost shouted, “I was taking steroids when it happened, and every doctor I’ve talked to said there’s no way steroids could cause it!” I practically jumped out of my chair. I’m slightly proud of myself, because I wanted to say “Those fucking pricks!”, but instead said, “I guess they’ve learned some new information, huh?” And he said that yes, they have, and that kind of thing happens often.
Then I imagined myself in a doctor’s office as a 70+ year old, listening to someone tell me how Fluoroquinolones can cause chronic, multi-system illnesses in addition to peripheral neuropathy and tendon damage – basically telling me what I obviously already know, just like what happened today. Only if that happens, I won’t be so nice about it. I’ll say in a curt, crotchety old lady way, “I’ve been telling you fucking assholes that since back in 2008.” I think it’s going to happen someday. (I’m going to guess around 2053, LOL.)
Okay…it’s possible I’ll be polite rather than crotchety, but I can definitely picture a scenario like my steroid eye spot story happening with FQ Toxicity eventually. (And maybe even MCS.) They won’t be able to ignore this problem forever.
It goes back to this concept, which is totally foreign to some people: when presented with unfamiliar information, be curious and open-minded rather than dismissive. (Which could apply to any topic, not just medicine.) I’ll bet that those doctors could have searched and found SOMETHING about steroids causing my eye condition if they had tried, even way back in 1998. Instead, they dismissed me.
The moral is: stop dismissing patients like me. Listen to us. Study us. Our adverse experiences are mirrors showing the world that something is terribly wrong and needs to be fixed.
Having said that, I do actually understand why doctors dismiss us. Can you imagine learning you prescribed a dangerous drug to hundreds of thousands of people, likely ruining the health of who knows how many in the process? Learning you were misled by pharmaceutical companies, and that the whole modern medical paradigm into which you’ve invested your life, your time, and your trust is deeply flawed? That you’ve been unwittingly violating your Hippocratic Oath for years and years on end? I, personally, would be devastated to learn this. I almost can’t blame a person for clinging so tightly to their belief systems that they’re blinded to the truth.
Almost. But not fully. Because while I have compassion and empathy for doctors in this situation, the need for change trumps their need to stay nestled within blissful ignorance – the safety nets of their lives – while people continue to suffer at their hands. People are being harmed every single day by what medical science has gotten wrong, and it’s time for acknowledgement, change, and healing to occur.
Also, they’re shams, anyway, these safety nets. They don’t exist. The rug can be pulled out from any one of us at any given time, no matter how secure we think we are. (This applies to any aspect of life, including our beliefs.)
I forgive them, though. There’s something beautiful, in a strange way, of someone saying “I thought I was right, but I wasn’t. I’m so sorry I hurt you.”
Even the ones who can’t say this, who can never admit the truth – I forgive them because they’re human, and flawed. Just like myself, and just like everyone else. The difference is, the harm most of us inflict on others does not occur on such a grand scale as when doctors prescribe poison masquerading as medicine. But I still forgive the ones who don’t acknowledge me, if only because of this saying, which I’m sure many of you have heard before:
Holding onto anger is like drinking poison and expecting the other person to die.
God knows I don’t need anymore poison in my life.
To those unwilling to acknowledge Fluoroquinolones harmed me…okay. You’re not ready – I get it. But someday you’ll have to be. Your time is limited. The world doesn’t need anymore poison, either, and someday you’ll be forced to stop giving it out like candy and glossing over people’s suffering.
I look forward to that day.
And even if you don’t want or need it, I still forgive you for being human, and for doing your best – even if the best you could do was calling your patient crazy and insisting their symptoms were all in their heads. I haven’t always treated people well, either, or been eager to accept another person’s perception of a truth I wasn’t ready to hear. Because I’m only human, too. Just like you.
I hope the people I’ve hurt can forgive me as well.