Early on in my Grave’s Disease diagnosis, a client of mine told me solemnly, as though I was being initiated into a secret cult, “Don’t tell your doctors about the emotional parts of your disease—never tell them about the depression or the anxiety. If you tell them that those seem to be symptoms too, they’ll never believe you about the physical stuff. They’ll try to give you head meds and you’ll never get real treatment.”
Now, at the time, I was a younger, more hopeful version of myself. Sure, I had been told I was a fruitcake by a handful of doctors who had missed both my Grave’s Disease and Gallbladder Disease symptoms. Those doctors had sent me on my way with assurances that there was nothing amiss except new motherhood and lack of sleep. Like the compliant patient I was, I believed them. I laid awake at night arguing with my symptoms, explaining to them that they were not, in fact, real. And why wouldn’t I? Having been an absurdly healthy person all my life before my autoimmune diagnosis, my previous interactions with physicians had all been pleasant and straightforward. “Ah, Mrs. Cox, you clearly have strep throat. Let’s go ahead and take care of that for you!” Or, “Ah, Mrs. Cox, it looks like you have Poison Ivy. That’s an easy fix!”
There I was, floating along confidently on a sea of mutual warm regard with my care providers. I presented with symptoms that spoke for themselves. The doctors reached confidently into their white coats and gave me the absolute assurance of my diagnosis. We liked one another. I was a good patient. They were good doctors. Kumabaya and all that.
Things began to get a little pricklier in this wonderland of love after my second child. I was unbearably, unimaginably hot. I took two shirts with me wherever I went because I sweat through the first one nearly immediately. My hands shook and I couldn’t see straight. Any previous understandings I had of the word ‘tired’ were replaced by the kind of bone-crushing exhaustion I could only remember accompanying a particularly vicious flu. All of this was served up with a side of resting heart rate far up over 100. I went to a revolving door of PCPs, then to an OB, an eye doctor and a chiropractor who promised to tell me if my Ayurvedic Dosha was disturbed. I would have met with a dancing voodoo priest and sacrificed a chicken to the ancestors to get answers at that point.
Desperately, I tried to explain that I felt wrong–that something was really, really wrong. Now in my docs’ defense, most Graves patients lose weight and I rapidly gained it instead. But, everything else was an exquisitely consistent textbook presentation of hyperthyroidism. When I finally found a doctor who held my hands while I cried and said, “I don’t know what this is, but I can promise you that I’ll look until I find it,” I was barely walking.
Want to know what my first endocrinologist said once I finally got diagnosed and my knight in shining armor PCP referred me out for thyroid treatment? This MF’er looked me up and down with barely-concealed incredulity and said, “How could you let yourself get this way?” I just blinked at him. I didn’t even have the strength to fight back.
I think I speak for all patients with chronic illness when I say that we don’t expect our doctors to know everything at first glance. We’re ok with them riding along with us to figure it all out as long as we are assured that they’re still looking. Mostly, it seems like the problems we face in getting our physicians to adequately treat us are rarely a crisis of education or intelligence on the part of the clinician. Rather, it’s a crisis of curiosity. I’m not anyone’s therapist at the moment, so I feel that I can say in salty language that I want to start a federation that doctors can join called ‘We’re Fucking Curious.” It will save those of us who are medical weirdoes a lot of time. We’ll only approach the docs who can tolerate a little uncertainty as we go. And also, we can honestly tell you about our mood struggles without you punishing us by refusing to do blood tests and whatnot. WFC for the win. If I make t-shirts, who wants one?
Don’t get me wrong. I happen to really love doctors. I treat a bunch of them in my practice, and I can tell you right now that they are all bowed under the pressure of broken healthcare systems that work them too hard, bury them under paperwork and allow very little work-life balance. They got into this field to help people, to ease suffering, and to contribute to the world. I firmly believe that the PCP who diagnosed my Grave’s Disease is a sainted human, and that my current PCP and endocrinologist should get some kind of award that involves unlimited tacos and spa days for putting up with me.
But, that brings me to the present moment and why you can’t make an appointment with me right now. I’m jacked up and nobody knows why. It’s scary. I hate it. I was hanging out in Key West on vacation, drowning my troubles in the bosoms of the drag queens on Duval one moment, then my whole left side was numb and tingly the next. And, it’s simply stayed that way—for three months without respite. There is more to this story than that—an autoimmune relapse, a shady chiropractor and a handful of other oddball symptoms. But, I’ll just leave you with the abridged version of it. I was worried I could not provide good care because I have good days and bad days. I didn’t want to give anyone second best. So, I closed my doors and referred out all my clients to colleagues that I am very jealous of because they get to meet with my clients. My clients are—trust me on this–the best clients.
Over the last three months, while an army of specialists from various disciplines tried to sort out my angry left side, my Graves Thyroid Disease flared up and came to town for a hoe down. I’m not surprised by it. When I get stressed out, I can count on an autoimmune flare. It’s just part of my normal. But I was absolutely surprised when my PCP (unfortunately, not the nice man who diagnosed me) initially refused to pull blood for a thyroid panel. He went hard. He not only told me that this business with my left side was all in my head, but also insisted that I face the fact that I have an “anxiety syndrome” and needed to begin psychotropics that very day. I begged him to check my thyroid, and he finally relented because, let’s be honest, Graves patients are compellingly histrionic when we’re flared. I may have also grabbed him by the shoulders and cried like my mama had died.
But, I shouldn’t have had to beg. It’s astonishing to me in retrospect that I actually did. But, I was terrified. And he was the one in the white coat.
Graves Disease, for the uninitiated, causes anxiety and panic that mimic a true mood disorder. Honestly, I don’t blame him for taking one look at me and assuming I was out of sorts. I was. But, I have a disease that can cause exactly that sort of thing. It’s kind of the low-hanging fruit to investigate. Mostly, I was absolutely floridly panicked that if we didn’t identify and treat a Graves flare, we would miss a more troubling neurological disease that could also cause the twitches and tics my Graves produces. Spoiler alert: my autoimmune illness was in fact relapsed. I was right about it because as it turns out, I have lived in this body for over 40 years and am kind of hip to when it’s sick.
The worst part of this for me is that I absolutely liked and trusted this doctor and had seen him for years. I think he’s smart and kind and probably the absolute best sort of physician to see if you show up with an ear infection. But, he abandoned ship on trusting my self-report when I got complicated. And that makes me feel some kind of way about me and about him.
I treat depression and anxiety as my whole gig. I think they’re compelling and real and that medication is a boon to suffering people. But, I also know that many studies have found that women’s physical symptoms are ignored, downplayed and untreated exponentially more than men’s are. That’s not even touching the crisis we are facing in this country regarding woefully (and lethally) terrible health care for women of color specifically. Women die more often from lack of intervention. What if I had been the kind of patient who was shamed into taking anxiety medication when instead my hyperthyroidism is flared? What if I had allowed this guy to make me embarrassed of insisting on answers to my physical problems? I would have ended up seriously, life-threateningly ill.
When I get physician referrals to therapy for anxiety and depression, I always do a careful inventory of what kind of labs have been done on that client. I have caught a shocking amount of thyroid havoc that should have been diagnosed before that person was sent to me to beat their head against a wall in therapy. That’s not to mention the many other disease processes that can impact emotional health about which I’m less intimately informed and catch less well. One of my deep, dark horrors is subjecting a client to unhelpful therapy that will never work optimally because their bodies are sick. I follow up on this stuff religiously, and I hope that all mental health workers do as well.
I love therapy. I’ve devoted my life to it, and I go myself as I think every human should. But, I can tell you right now that the most gifted clinician in the world can’t disabuse your body of symptoms driven by physical issues. I’m living proof of that. We can work with those symptoms and the extraordinary grief that comes along with learning to cope with a life-changing diagnosis. But we must do that with all the information in front of us including what you actually have, and how that uniquely impacts emotional functioning. You know, like rational people who want to take good care of ourselves with extravagant compassion.
The point of this blog, personal though it is, is to encourage all of you to take a stand for your own health. If your doctor won’t listen to you, get a new one. Make the care team you have communicate with one another and be collaborative in your treatment. That absolutely includes anyone who is taking care of your mental health. My new PCP’s mom has a chronic autoimmune illness. He gets it when I tell him that something is off, he believes me, and he looks for it. Honestly, at the end of the day, that’s all we want our doctors to do for us. We want them to look for it when we tell them something is wrong so that we can have options for care.
I’m glad that doctors are attending carefully to patients’ mental health along with their physical health. The suicide rates in this country alone demand that kind of holistic care. But this needs to be done in tandem with careful attention to physical symptoms, especially with women and people of color, whose pain and discomfort is too often written off as somatizing.
Usually, I end these blogs with some kind of invitation to reach out for a session. But, I’m still getting my legs under me health-wise. So for now, please take good care of yourselves. If you’re looking for a great therapist, feel free to reach out to me and I’ll be happy to recommend someone I’d send my own mama to see. Be well!
Your Partner in Healing,