Today, my primary care doctor opened my appointment by telling me that he believes I’m a hypochondriac. I’ve survived and/or live with multiple illnesses, including cancer. I live with more than one rare disease, including common variable immunodeficiency, which is serious and life-threatening. I have autoimmune diseases, renal insufficiency, postural orthostatic tachycardia, and arrhythmias. I’ve been treated for atrial fibrillation. I have aortic root and ascending aortic dilations. And I have PTSD and serious, life-threatening, bipolar.
All of this is documented in my medical record at Intermountain, where my primary care doctor works. It’s not in my head. It’s not me imagining health issues that don’t exist. They exist, and I’m attempting to address them. I worked as a medical writer and editor at some of the best institutions in the country for years. When I get a diagnosis or face a health challenge, I do research and have the determination to address the situation however I can.
Today, I was asking about my fasting blood glucose being over 100 for the past two years. That’s diagnostic for prediabetes, but none of my doctors brought the high results to my attention. High blood sugar seems like something I should be able to discuss without being called a hypochondriac. It’s especially important given that my chances of developing diabetes are 3 to 4 times higher because I have bipolar disorder.
I was also at the appointment to discuss my BUN level and (BUN/creatinine ratio). My BUN has doubled in the past 5 months and is above the normal range. Perhaps that’s not an issue, but given my history of renal insufficiency and the fact that lithium, which I started taking at a higher dose 5 months ago, causes kidney disease in about 26 percent of patients, the higher BUN level seems like a valid issue to raise.
Healthcare systems don’t seem to welcome the type of patient I am—one who’s female, has chronic health issues, and has a mental health diagnosis. We wait years or decades before our issues are taken seriously and addressed. By that time, we often have medical trauma because of how the healthcare system has treated us or our conditions have progressed, often irreversibly, because we were gaslit into thinking it must all be in our heads, a point our doctors belabor.
If I can’t approach my doctor for routine care, explanation of test results, or to discuss a health concern—the very things primary care providers are supposed to do with their patients—without the entire encounter being dismissed as evidence of a mental health problem, then why am I even trying so hard.
This isn’t the first time this has happened here in Southern Utah. Another doctor at Intermountain denied the fact that I had atrial fibrillation despite a preponderance of evidence that I had the condition. I was denied the medication I needed because of his insistence that I didn’t have afib. Yet another doctor at Intermountain tried to tell me my diagnosis of common variable immunodeficiency was unfounded despite the fact that I have extensive documentation of that disease from accomplished immunologists who know how to diagnose and treat immune system dysregulation.
I’m tired. I’m tired of this treatment. I’m tired of this sexism, this ableism, this dehumanization. I’m just tired. These attitudes and behaviors on the part of doctors cause unnecessary and severe iatrogenic illness for those of us who are subjected to them. I can’t carry that burden on top of my actual health and mental health issues. I’m tired.
I’m dealing with so much trauma that it’s been destabilizing twice now in the past year. I’ve lived with trauma and the sequelae of trauma my whole life, but learning more about my childhood trauma over the past twelve months has been too much for me to process, cope with, or even understand.
Being in Southern Utah triggered a deeper understanding of my trauma. It’s an extremely traumatized and traumatizing place. Living there was like living in a vivid dream, a scary one, one that showed me more than I could process about my childhood, my family, and my father. An alt-right extremist leader who crossed boundaries with her own students didn’t help. A seventy-year-old who sent me an inappropriate photo of himself didn’t help. A trucker who tried to solicit me for sex at a family restaurant didn’t help.
People’s behaviors were so unreal there that I felt like I was being gaslit all the time. Reality didn’t feel like reality. Things that happened on a daily basis were unfathomable.
Law enforcement being sexist, dismissive, and steeped in LDS beliefs and values didn’t help. The domestic violence center only doing phone intakes and scheduling those intakes three days out didn’t help. Their failure to keep their intake appointment with me didn’t help. Not having anyone believe me about any aspect of my trauma or the unfolding situation with my husband didn’t help.
Nothing helped. Nobody helped. Even my therapist violated ethical boundaries by touching me during sessions, almost like she was laying hands on me to remove trauma from my body. She said she could do so because she was also a licensed massage therapist. That’s not the case. She also proselytized heavily during our sessions, diagnosed my husband without seeing him or treating him as a patient, and told me to leave him. When I needed my therapist, she pushed me deeper into fear and exploited my vulnerable state to foist a religious message on me and to dictate what I should do with my life.
My husband didn’t get support, either. Not really. He was shoehorned into the same theocratic system as me. He got messages about the man being in charge, husbands monitoring what their wives do, and so forth. He got a message about everything I was perceiving being untrue. And that’s just not the case. I have legitimate concerns about my husband’s behaviors, including those that also pushed me deeper into fear.
I ended up having a brief reactive psychosis/mania twice, once in February and again in September. That can happen when current traumas are too much for me to bear and my whole complex PTSD web is activated. I’ve been dealing with far too much medical trauma, community trauma, and domestic trauma for far too long. It’s been more than two years since I developed long COVID and the slew of health diagnoses that followed. Two years since I started writing and speaking publicly about the treatment of the LGBTQ+ community in Southern Utah. Just under two years since so much more of my childhood trauma came to light. More than two years of solid stress with my husband, and before that the destabilization within our relationship that the pandemic caused.
I tried so hard to make things work in Utah, to find a place for my voice, my writing, for me as a person. I tried so hard to fight for others so they could also have a place in the community. I tried so hard to overcome diseases and conditions that leave most people homebound. I tried so hard to fight for my marriage and for my husband. I tried so hard to heal from traumas that I now fear I’ll never be able to heal from.
I don’t know what to do. I know I can’t go back to Utah. I know I’m too physically ill and too emotionally destabilized to make it on my own here in Oklahoma. I know I can’t leave my husband behind because he’ll languish in that environment, which he doesn’t deserve. Despite some of his behaviors, he also deserves a chance to grow and heal. I know major changes need to happen so I don’t panic, dissociate, and have brief psychosis every time something else happens that’s traumatizing.
I’ve really never been more terrified, day by day, moment by moment, second by second. My whole world is gone. My whole life is gone. I’m like the speaker in one of my poems who loses everything a little at a time until there’s nothing, not even hands with which to write or eyes with which to read.
I used to think to be not alone meant / never having to walk through the high wheat / or struggle in the water.
— Allison Seay
I am standing in the high wheat. Field with Sheafs, by August Haake (1911–1914), oil on cardboard. Image used in accordance with U.S. public domain laws.
When I was a teenager, my mother’s best friend came over one night after a long absence from the weekly happy hour my mother hosted. When she arrived, the friend was serious, even somber. She stayed just long enough to tell my mother and their mutual friends that she wasn’t coming back to the group because she had quit drinking.
Couldn’t you just come and not drink, someone asked, flummoxed by the surprise announcement.
No, she said. And I can’t be around any of you again, not while you’re still drinking.
She explained that being around people who drank would jeopardize her recovery. She couldn’t be in that physical or psychological space anymore. My mother didn’t understand, or maybe she understood but didn’t accept her friend’s decision. This was, after all, the woman who had been there through everything with my mom. They’d known each other for more than thirty years. This woman even picked out something for my mother to wear to my father’s funeral. I remember her bringing a selection of outfits home for my mother to try on.
Nothing black, my mother had insisted. I hate it when widows wear black at funerals.
Her friend complied. She fanned out half a dozen wool and satin pieces in beryl blue, emerald green, and ruby red—the rich colors of a painted landscape. My mother sat slumped on the edge of her bed, barely present.
Get up and try these on, her friend coaxed.
Her concern for my mother was evident. It was one of those defining moments in a friendship. Through death, they had become even closer—friends for life, or at least that’s what everyone thought at the time.
After her announcement, my mother’s friend rose and walked purposefully through our paneled den, the one with the mirrored wet bar my father built before his death. She reached the thick cedar door and let herself out.
Empty Space
There are many differences between the alcohol recovery model and the mental health recovery movement. Still, situating myself within the recovery movement feels similar to leaving everyone and everything I’ve known, the way my mother’s best friend had to all those years ago. For one thing, there isn’t a recovery-oriented support group in my area. I don’t feel comfortable at local support groups that follow the disease model, suppress or dismiss research that challenges that model, treat the DSM as authoritative, teach people that medications are the best and often only option for managing their assigned illness, accept funding from pharmaceutical companies, and act as mouthpieces for those companies.
I’ve tried to take part in those groups—to create a space for myself and my view there—and I’ve been met with everything from dismissiveness to outright disdain. For me, they are not places where healing can occur. Rather, they are culdesacs that lead to feeling, and learning to be, what Lewis Mehl-Madrona describes as “forever ill.” In Coyote Wisdom, he writes:
On the down side [sic], support groups for particular illnesses sometimes encourage stories that keep people sick and support them in seeing themselves as ill. People who absorb these stories can come to define themselves as forever ill. A healing story needs to challenge their membership in the community of sufferers.
In my experience, label-specific support groups don’t tell healing stories or encourage peers to create those types of stories for themselves. Instead, I’ve heard group leaders refer to their own mental health labels as “awful,” “terrible” and “horrible.” I’ve seen peers internalize that language and mindset. This does an incredible disservice to the community and is, in my opinion, contemptible. I won’t set foot in those groups anymore because of the culture of self-loathing they cultivate.
Recently, I ran into someone from a group I used to attend. Though it was wonderful to see him, I wasn’t sure how to pick up where we left off more than a year ago. My DSM diagnosis has changed since I attended that group, but that information isn’t important because the DSM isn’t an accurate or helpful classification system. Whatever label I do or don’t have is just that: a label. My thyroid disease has also been addressed, but explaining how that affects my well-being is taxing for even the most attentive listener. So a silence opened in the conversation, like a crevasse in brittle ice. I stood on one side, he on the other. I care about him. I also care about myself and need to do what’s best for me, which includes walking purposefully on my own path, the one that leads to healing. Now I understand how space forms between people, like it did between my mother and her best friend.
Hello, Out There?
There are like-minded people in my area, and I’ve had a difficult time connecting with them. Often, when I reach out, I don’t get a response. I know survivors experience frustration, exhaustion, burnout, and a host of other issues related to trying to have their voices heard while also caring for themselves. Nobody in the recovery movement owes me anything, and I don’t want to take time or energy away from their important work. At the same time, it’s hard to go it alone when I know there are others in town who feel the same way as me. I like to imagine us coming together in friendship and shared purpose. (That’s my internal idealist talking. I’m trying to find my internal realist, but so far she’s eluded capture.)
I’ve had difficulty with recovery-oriented online support groups as well. Members seem to spend an inordinate amount of time fighting with one another, suppressing individual voices, and creating caustic environments in other ways. It’s exhausting to take part in those groups. I often come out feeling worse than when I went in. Online groups also tend to share a great deal of misinformation about mental health, most of which goes unchecked. There are perspectives and opinions, certainly, and those should be respected. But sharing inaccurate information doesn’t help anyone.
Whether in person or online, it probably doesn’t help that, in addition to being an idealist, I’m sensitive, introverted, and have a low threshold for interpersonal strife—either experienced or witnessed. Still, I’m here. I want to speak, write, and act in accordance with what I value, which is a model that promotes well-being over ill-being, individual approaches over generalized protocols, and healing over harm.
I’m over here in the high wheat, in the water. I will stay here even if nobody joins me.
Aside: Reaching Across the Crevasse
One way the mental health recovery movement differs from the alcohol recovery model is that there’s really no room for leaving anyone behind. That silence I felt when talking with my friend recently? I decided to try to connect with him to the best of my ability. He’s my people. Everyone with lived experience is my people, and I am their people. I can’t forget that. While I do need to distance myself from the disease model and the “therapeutic” frameworks that fall out of it, I don’t need to distance myself from anyone who’s open to where I am coming from, even if they remain on the other side of the crevasse.
In part, I told my friend that I am looking at well-being as opposed to ill-being these days, and at a mental health model that supports everyone (regardless of DSM label or lack thereof) having the tools and supports to live meaningful lives. I added that I believe we can all heal from trauma, adversity, and distress—which comes in many forms and touches most of our lives in one way or another. Finally, I said that I don’t think the medical system (physical or mental) goes far enough in not just treating illness and ill-being but in showing us ways that we can thrive and experience well-being.
I guess that’s my new elevator pitch, though it’s a little long. I’ll work on it.
In all chaos there is a cosmos, in all disorder a secret order.
— Carl Jung
This morning, my chihuahua threw up on me in bed. I was curled up in the fetal position, and she was behind me with her chest against my back. You could say she was the big spoon and I was the little spoon, as preposterous as that might sound, given that I am approximately eighteen times her size. But there it is: big spoon = chihuahua, little spoon = human.
Understandably, being woken in this manner led me to believe I might not be in for the best of days. As I took care of my dog, got myself cleaned up, and cobbled together all the linens that needed washing, I felt defeated before I’d even brushed my teeth. Then my centralized pain set in, along with intestinal distress because I dared to eat out yesterday afternoon. As if that weren’t enough, I felt like I was being strangled. Yesterday, my new thyroid surgeon examined the scar on my neck from the thyroidectomy that my old thyroid surgeon performed last fall. He needed to assess how much scar tissue was present. Turns out, there’s a significant amount of scarring, and manipulating the area has made it extremely tight and painful today.
I needed to get it together, and fast. My first session with a holistic therapist was scheduled for noon. This meeting was important to me. I didn’t want to arrive at the therapist’s office sweaty, whiffling, and redolent of dog vomit. I needed to be lucid, solid, maybe even likable. (The last one is always a longshot for me, but I hold out hope with every new interaction.)
I made it to the session with my pestilent body in tow. A sack of pain I was. The therapist put me at ease by pointing out her Carl Jung action figure and saying, Not everyone has one of those.
They don’t, I thought. But they damn well should.
She also had a stuffed Yoda on her desk. He was wearing spectacles. I should probably show her my bright orange, 3D-printed Yoda head at our next meeting. I don’t have any Jung tchotchke to share, but I do feel Jung at heart, so at least I have a pun lined up for next week’s session.
The therapist knew things were serious when she began charting my immediate family, and I was in tears by the time she asked me what my father’s name was. I would have totally lost it if she’d asked my mother’s name. (It was Merry, which is heartbreaking considering how much trauma she was born into and lived through. Given her life circumstances, my mother’s name was a cruel, impossible demand—a mirthful adjective that would never find its occasion. What were my grandparents hoping for, beyond hope, when they fitted her with that albatross?) In short, I wasn’t able to mask my physical or emotional pain, and that made me feel as vulnerable as a fledgling swallow leaving the nest for the first time.
The therapist asked how I was feeling. I told her I was a burning tumbleweed careening down a hill, setting the countryside on fire.
She seemed to understand.
I asked her if she thinks there’s more merit to the diagnosis of post-traumatic stress than other DSM diagnoses. She said she doesn’t give a hanging chad about diagnosis. She only cares about hearing and seeing the person in front of her.
You are not a diagnosis. You are a human being, she said. What I’m hearing and seeing is you.
I tried not to cry because I don’t want Therapy Dana to be someone who is weepy throughout an entire session. But I’m not sure I’m in charge of who Therapy Dana is or isn’t, let alone what she does and doesn’t do.
I chose the Jung quote above because it makes me think about the DSM and its litany of disorders. The DSM is a dead end that never leads back to order. How do you make your way out of that book once you’re in it? My therapist says you have to stop looking at the disorder and start looking at what will help you heal.
I don’t always know where to cast my gaze, but I’m looking.
If you cannot find it in your own body, where will you go in search of it?
— The Upanishads
My freeze response this morning was kind of like this, but without all the great scenery and gentle animals. A Fairy Tale, by Arthur Wardle, oil on canvas. Image used in accordance with U.S. public domain laws.
This morning, I felt like a length of fossilized wood, my body having turned to stone. I was lying in my bed, white sheets a blanket of fresh snow glinting near my mineral-laden bark. Every time I imagined getting up, my torso and limbs tightened. I was stuck. I wasn’t able to move for more than an hour.
This happens sometimes. It’s one of my responses to trauma. Most people have heard of fight and flight, two physiological reactions to threats and perceived threats. There are two other, related responses: freeze and fawn. Many people who’ve been traumatized have some combination of these four responses. I’ve experienced all four, but my primary responses are flight and freeze.
Of the two, I like flight more. Much more. At least with flight, I’m in motion. I feel like I’m getting away from a threatening situation, my body moving, machine-like, under its own direction. Freeze is worse because I have all the emotions associated with flight, yet I have to experience them wherever I happen to be when the freeze response starts. Inside, I might be saying, “Just move. You’ll feel better if do. Start with a muscle, any muscle.” Yet I can’t move. I can’t speak. I can’t even think properly because my limbic brain has sand bagged my neocortex, which can only watch on, enfeebled.
You wouldn’t have known what you were seeing if you had walked in on me this morning. You would have seen a woman in seeming repose staring at a ceiling fan, its faux-wood blades smearing with soothing regularity.
Aside from the discomfort of the freeze response, I hate freezing because it’s triggering. The first time I froze was when I was thirteen years old and my father’s best friend began molesting me. I also froze in 2009 when I was sexually assaulted. Powerlessness, shame and despair are associated with the freeze response. It’s no surprise that people who freeze when being molested, raped, and sexually assaulted have higher rates of post-traumatic stress than those who don’t. There’s more self-blame associated with freezing than with the other responses to trauma.
I had physical symptoms this morning, too. A migraine. A tinnitus flare-up. Burning mouth syndrome. These issues, along with my freeze response, were my body’s way of dealing with distress I experienced yesterday. Along with three other psychiatric survivors, I was invited to share my account of abuse within the mental health system with a local healthcare organization. As I listened to the other women’s stories, I felt like my heart was being fed into a meat grinder, stuffed into a casing, and sewn back inside my chest. Those are the strongest, bravest, most intelligent people I’ve had the pleasure of sitting alongside in a long time. The day took a toll not just because I shared my story, but because we shared our stories. Nobody should endure what we and so many others have endured. Nobody should have to live with the trauma that led us to seek care or the additional trauma that seeking care can lead to. Nobody should have to face the very real risk of being retraumatized every time we tell our stories in the hope that healthcare might improve, that others might understand us, and that we might be able to speak and write our way back to life.
Though I still feel crystalline, I am moving, albeit slowly. I’m writing slowly, too, with my fossilized mind.
Everything I need to know is in my body and always has been. The body is a great teacher, and I am trying to learn from what it is telling me rather than vilifying it. The more I can see why I am freezing, as opposed to resisting the response, the more I am able to see what my body wants me to pay attention to. Today, I am paying attention.
Throw roses into the abyss and say: “Here is my thanks to the monster who didn’t succeed in swallowing me alive.”
— Friedrich Nietzsche
The Roses of Heliogabalus, by Lawrence Alma-Tadema (1888), oil on canvas. Image used in accordance with U.S. public domain laws.
I am alive, despite having experienced trauma for years. You could say trauma is my monster, a hydra that’s reared various heads over five decades, from infancy into middle age. Sometimes all the heads appear at once, like a giant air balloon tied to another, identical balloon—and another and another—a train of memories and flashbacks as real as the window I’m looking through now at the world beyond. But there’s never glass between me and the trauma, not a single pane. I meet it with no shield and no weapons.
Nietzsche says we can’t live as the vanquished. We have to live as the victorious. To do this, we must show our thanks to the monster for not knowing how to devour us. We must throw roses into the abyss. For him, the monster is what lies within us. For me, the monster is both internal and external—and never exclusively one or the other. A thing happens. As a sentient being, I respond. Now the “thing” is within me, kneaded into my response, often long after it has raised its tail and returned to its bottomless lake. This works in reverse, too. As a sentient being, I can’t perceive anything that happens without being informed by my lived experience. The external is never simply external, and the internal is never simply internal. Within is without and without is always necessarily within.
Trauma starts outside us, but it twines its way through each of our two hundred six bones, ninety-thousand-mile nervous system, and more than six hundred forty skeletal, visceral and cardiac muscles. The sequelae of trauma are significant and can include disruptions to nearly every system in the body, behavioral and cognitive changes, high rates of retraumatization, changes in our core beliefs and values, difficulty with living a “normal” life, and much more.
So the monster is not just internal. It is also external. And the two are perpetually engaged in a simple but exquisite water dance. For me, throwing roses at the abyss performs three functions. First, it’s a way to honor the parts of me that have worked together to survive. Second, it’s a way to begin forgiving the monster that is trauma. And third, it’s a way to bring greater presence and beauty to my past, present and future—even if trauma continues to be there, hissing in the margins.
I am alive, and this site is where I throw roses into the abyss. Let them fill the chasm.
Dana Henry Martin 