I’m back there again. Back in that place where I’m ready to give up on doctors and just let this shit kill me young. I mean, it’s not like there’s a whole lot they can do, anyway.
There are surgeries, but they are high risk and have very low success rates, and my EDS and Sjogrens pile on potential complications quite heavily. I already had a taste of how bad surgery can be for me with my hip surgery and its lingering effects – I’ll never have full mobility or weight bearing on my right leg again.
There are pain meds, but I’ve gone that route already only to find that I can’t tolerate most of them. The only one I can tolerate that actually helps isn’t legal in my state.
I’ve tried physical therapy. It made things worse. The kicker here is that I know exactly why it made things worse – because the problem is within my spinal cord and brain – and no one wants to trust what I tell them. From the ER doctors, to the doctors I had at that time, to the doctors I have now – I’ve tried to tell them about the damage from that incident (and the one a couple weeks ago), and it gets brushed off each time I bring it up. No on is interested in hearing about something that I KNOW almost killed me. No one cares that I did in fact cross over and come back as a result of not getting appropriate medical care.
No doctors want to trust that I’ve done my research. My requests aren’t out of nowhere, but I can’t convince anyone that I know what I’m talking about. They can’t accept that I do in fact know more about my conditions than they do.
I’ve never, in all the abuse I’ve endured, been so desperate to be heard. I’ve never felt so much like I’m down in a pit, screaming out exactly what kind of help I need and how to do it, only to have passers by glance down, disgusted and offended by my voice, and walk away.
And what power do I have? Do I send letters and file complaints that they will also not take seriously? Do I complain during my appointment – where they already don’t respect me enough to listen and value my input? Do I yell and scream over the phone just to get hung up on? Do I post a fucking ad in the local newspaper? What the hell can I do to find a doctor who 1) knows at least as much as I do about my conditions, 2) knows how to listen, 3) knows how to communicate respectfully, 4) doesn’t treat me like a specimen EVER, 5) puts in some effort to help me find the right specialists, 6) honors my requests for specific tests even if they don’t fully understand why I’m asking, 7) …
I can’t handle any more shitty doctors, and this area is just so damn overrun with sub-par “medical professionals”. I just can’t. I’m seriously DONE. I am at the end of my tether, and I’ve been there for quite some time.
AND THIS BULLSHIT IS FUCKING COMMON!!!! Spend some time in support groups for EDS, Sjogrens, and Chiari (and countless other chronic ‘invisible illnesses’), and your heart will break with how often someone brings up how horrible their experience has been with doctors not caring, not listening, not respecting them, not trying hard enough to help, or just completely dismissing them as a psych case in need of counseling instead of medical treatment.
Where the fuck are we supposed to find the motivation to keep fighting when it feels like the people who are supposed to be helpful are fighting against us?! How are we to remain hopeful when we see doctor after doctor after doctor, and we just keep getting worse instead of better because their failure to ____? How are we supposed to maintain any sort of trust in modern medicine when we have to literally hunt down decent doctors? And what makes a “decent doctor”? The overachievers. The ones who actually went into medicine to be helpful and not just for the money and prestige AND who haven’t hit burnout, which seems to be happening right out of med school these days.
I have no more trust to give them. No more blind confidence in their opinions or recommendations. I have zero reasons to let their word be superior to mine regarding my health. Wanna tell me about their educations? I’ll tell you to choke on a bag of dicks. It’s clear to me that their education is insufficient, especially when, time after time, I’ve proven I know more than they do about my conditions. If I could find a doctor who’d admit they don’t know enough but are willing to learn with me, I’d happily share any and all relevant research I find. BUT WHY THE HELL SHOULD I BE THE ONE DOING ALL THEIR WORK FOR THEM?! Why can’t they take the time to do some research on their own? Why can’t they just spend some time networking and find someone better qualified and write me a referral? And if I do give them research, why can’t they be appreciative instead of annoyed? What the hell kind of “doctor” thinks it’s okay to feel threatened or disgusted or irritated or anything other than grateful when a patient offers something that will help the doctor take better care of them? A heartless, self-absorbed, asshole. An arrogant, elitist bitch. A lazy burnout. An insecure bully. That’s who, and those people make up the majority of all doctors in not just my state, but all over this country and in others. Modern medicine is all about money and jerks on power trips these days.
That’s how I see doctors. Most of them, anyway. I know there are good doctors out there because I hear about them. I have two doctors now who are good people, in medicine for the right reasons, and who want to be helpful. They still don’t listen very well. They still don’t trust that I’ve done the research, and they definitely know less about my issues than I do. I’m gonna have to print out everything I’ve read and take it to them. That means not only am I going to have to track down old research I’ve already done, but I’ll have to ask my husband – who, by the way, already has way too much on his plate – to print stuff at his workplace and bring it home for me to take to my appointments. He can get in trouble. Strangers can possibly get hold of things I might want kept private. It takes days because he’s so overburdened at work that it’s easy to let something like this be forgotten, or he just doesn’t get time. If we had money to spend on a printer, we’d alleviate those concerns, but then we’re spending money on something that should be the responsibility of my doctors.
I fight SO hard. I read so much. I put hours into preparing for my appointments. And yet, a year and a half after my spinal injury, I’m still fighting to get my PCP to order all the tests and refer me to all the specialists I actually need. And she’s still an improvement over all my previous doctors!
I’m so… fucking… depleted. desperate. heartbroken.
I can feel it shifting now from anger to defeat. I just don’t even have the energy to be angry. It’s there for a bit, but it keeps flipping faster and faster to wanting to throw in the towel. I’ll have a few moments of a rageful “WHYYYYY?!?! WHAT THE HELL IS WRONG WITH YOU?!”, followed by a silent guttural scream, then the crying starts, and I just want to crawl in a hole and hide until my heart stops beating.