In my current constant prodrome-migraine-postdrome state, it's been quite difficult for me to write much of anything in the last few months. Language is usually the first thing to go for me when I'm struggling with migraines, so I'm not sure where this post came from—it just tumbled out of my brain. I am a visual artist first, and have been leaning more on communicating visually. I started another Instagram account to log some of the migraine imagery I've been playing around with while up late with migrainesomnia. Check it out: @bimpsegetsweird
Another day as a complex chronic patient in the American healthcare system, another reminder that healthcare access does not necessarily equal care.
I am so fortunate to have the insurance coverage and healthcare access that I do, living where I do, but there is no end to the Sisyphean task of managing my health and the revolving door of people who are supposed to be helping me with it. I've lived with healthcare insecurity in one form or another for my entire adult life, and I gotta tell you: it's exhausting and it never ends.
I've dealt with insurance changes and the constant looming threat of losing coverage. I've lost access to doctors as these networks change, and more recently, I've had doctors suddenly leave their practices with little or no warning. It's happened many times in the last few years, and at least three of them have left in the last eight months.
It's not their fault, the industry is changing rapidly, conditions for primary care providers in particular are pretty crummy, and they are humans just trying to make decisions about what is best for them and their families. I wish them all the best. I don't blame Obama or the Affordable Care Act either; our systemic healthcare woes didn't start there. But that's part of why this stuff is so frustrating for me: it's not really anyone's fault, though having somewhere and someone to direct my anger, anguish, and frustration at might help me feel a little less like I'm aimlessly floating through space.
When I changed insurance earlier this year, I lost access to 12 out of 13 different doctors, most of whom I saw every 2-3 months. Yesterday I learned that lucky number 13 has disappeared as well.
This is not just upsetting or inconvenient, it has also come with incredibly poor timing. I've been putting off calling to make an appointment for weeks because of the intense doctor anxiety that has bubbled up this year due to the turnover in my care. Two decades of misdiagnosis, mistreatment and dismissal prior to finally getting an accurate diagnosis of Ehlers-Danlos Syndrome two years ago has imbued my medical encounters with dread and terror. Repeated trauma over a long period of time will do that, but with the help of several wonderful practitioners and a shit ton of therapy, this is something I have made great strides in dealing with. Yet as with all other things related to my complicated health, it's never over, and this year it's gotten especially intense.
In addition to being awash in anxiety over my medical care, I've been weathering the seas of the worst Chronic Migraine flare I've had in years, since I've been unable to continue Botox treatments on my new insurance. When I learned my doctor had left her practice, I was calling to make an appointment—in part—to get a referral to see a new neurologist so I can hopefully get my headaches back under some semblance of control.
EDIT: With the exception of the chronic migraines, and other routine moderate-severe symptoms I regularly experience, my health is actually relatively stable—though it's hard for me to say that with a straight face. The timing for this could have been even worse, had I been experiencing an acute health crisis. I have lived with migraines in this form for most of my life, so shitty though they are, I can deal. It affects and limits every aspect of my life, but I am somewhat used to it.
Last month I also received my first denial letter in my disability case, and was hoping to get additional support for my appeal from my primary care doctor—the only doctor I was under the care of, and had an ongoing relationship with. Or, at least, I did. Now I have to hope her temporary replacement will be able to provide some support in that endeavor, though my hopes are not particularly high. And then I'll have to start all over again with her replacement, after she moves on and/or I move to a different doctor myself.
It’s hard not to feel hopeless when I constantly have to jump through the hoops of seeing new doctors, explaining my ridiculously long and complicated health history that contains multiple conditions they may have (probably) never even heard of—all while trying not to have a panic attack and/or shut down—to get to a point of comfort with them, and they with me, only to lose them again. Seeing doctors is hard enough for me without having to do this over and over again. And frankly, I really feel like I can’t keep doing this.
Do you have any idea how hard it can be to even find a doctor I might at some point feel comfortable with? Who might at some point also feel comfortable treating me, and trust me enough to defer to my advanced knowledge and share in decision making about my care? It's not easy, and I've had more than one doctor turn me away because of my complex issues. I've certainly had to turn more than one doctor away because of their delicate ego and/or insensitivity.
I need someone who is collaborative and humble (well, humble as a doctor can be 😜), who is willing to take on a complex patient and all of the uncertainty—and risks of polypharmacy and off label prescribing—that comes with us, who is kind and has a good sense of humor (because with a body like this, trust me, you need one), who is willing to say, "I don't know, but let's find out together," who can spend the time with me that requires. And who is also in my limited insurance network.
A tall order and a little bit of a unicorn...
But they exist. While I know my prospects are grim and I face the likelihood of having some run ins with duds, assholes, and people who might have been better suited to a career not involving alive humans, I know these great unicorn doctors exist. I know because I've been so so lucky to find a few of them, and they've each been so helpful to me, even in our limited time together.
I keep a hall of fame for them in my heart, though I wish I did not have to. Everything will be fine. I'll figure it out because I have to and I always do, but goddamnit I'm tired.