When Your Disorder Doesn’t Exist
‘Medically unexplained’ symptoms are as misunderstood as they are common. Here’s what I wish people knew.
At 24 years old, my stomach hurt. A lot. It wasn’t “gastrointestinal discomfort” (though multiple doctors tried to argue about my diet), nor did it indicate that I was menstruating (I was anorexic and hadn’t done so in years).
This was a “my abdomen is being sliced down the middle by a jagged instrument while a third, more decisive tool churns my insides apart” pain. It was wrenching, twisting, mechanical. The pain started in my sternum and spread down, sideways, outward, and inward. Standing was bad; sitting made it worse. It took my breath away. To this day, its intensity is unmatched.
I’m 31 now, and the pain is still here. It still shocks me with its acuity.
As I write this, the pain begins at my left rib cage and cuts diagonally, decimating the organs in its path. I can see the pain — it is textured, colorful, relentless — and if I focus too intently, it ascends toward my head. The pain makes me dizzy. It makes me want to scream. Tomorrow will be similar but different, simultaneously predictable, mundane, and grotesque.
The pain has been a constant presence for the last seven years. And according to the medical community, it isn’t real.
I’m not sharing this to find answers (trust me, I have tried) but to feel (slightly) less alone. I also hope this resonates with people who, like me, have exhausted their options, have no conclusions, and are tired of others implying they’re just Mad.
I am mad, but not in the “crazy” sense.
My official diagnosis is “somatic symptom disorder” (SSD). Unfortunately, there are multiple phenomena that fall under this category, and their only similarity is that they don’t appear on tests. In terms of getting diagnosed, this means that I spent two years cycling between gastroenterologists (they suspected internal bleeding or cancer, but my colonoscopies were fine), hematologists (they learned that I was extremely anemic and gave me iron infusions, but couldn’t explain the pain), nutritionists (irrelevant), herbalists (ditto), Shamans (they told me I was haunted), and emergency rooms.
The ERs were the worst. At one point, I was going every two weeks, some times in a taxi, others on the bus. I would arrive sobbing, frenzied, enraged, and beg nurses and physicians to do something. Given that every MRI, CAT scan, and X-ray came up clean, there was nothing they could do. A few were kind and gave me diamorphine, which exacerbated the pain. Others were brusque and asked if I was intoxicated (I was five years sober) or suggested I just wanted attention (I did, but not for this).
They were incredulous, and I was disbelieving — clearly something was wrong. It was eventually one of these ER doctors who asked about my past. None before had done so, and while I didn’t understand why, I talked about my life.
After recounting episodes from my childhood, my years of homelessness, the multiple involuntary psychiatric holds, the addiction treatment centers, the deaths of my closest friends, the rapes (on and on and on), the doctor seemed assured. He was the first to utter the term — “somatic symptom disorder” — and while I didn’t like the sound of it, I was relieved it had a name.
Unfortunately, as with many constructs — particularly those that are psychiatric or psychiatric adjacent — just because something has been defined by the medical community doesn’t mean they understand it or can help.
In the broadest sense, somatic symptom disorder (its official DSM-5 classification) is categorized as:
Excessive thoughts, feelings, or behaviors related to the somatic symptoms or associated health concerns as manifested by at least one of the following:
1. Disproportionate and persistent thoughts about the seriousness of one’s symptoms.
2. Persistently high level of anxiety about health or symptoms.
3. Excessive time and energy devoted to these symptoms or health concerns
In other words, people have symptoms that are painful, stressful, and interfere with their lives, but they aren’t physically ill (even as they feel physically ill).
If this sounds a lot like “hypochondria,” it is, sort of. According to the latest iteration of the DSM, hypochondria no longer exists. Instead, this diagnosis has been subsumed under the labels of either “SSD” or “illness anxiety disorder.” The distinctions between the two are ambiguous and contested and not overly important.
SSDs have historically been deemed “psychopathological.” Their legacy is “hysteria,” a 4,000-year-old concept that typically refers to people (almost all of whom are women) exhibiting “physical and behavioral dysfunctions.” The term itself is a cognate of “uterus” because Greek philosophers believed that women’s wombs detached from our pelvises and “wandered” throughout bodies, inducing fake/real crazy along the way.
In the Middle Ages, “hysterical” women were witches, and by the 19th century, hysteria was understood as a chronic disorder characterized by the presentation of baffling symptoms, including (but not limited to) physical complaints about bodily functions and neurological defects. A few members of the medical community also decided at one point that “hysterics” were demonically possessed, one noted that hysteria emulated almost every medical condition and was too bizarre to treat, and then Freud (a raging misogynist who was horrifically abusive toward his patients, including his daughter, and plagiarized most of his work) concluded that “hysteria” indicated that repressed trauma was converted to physical symptoms.
While I don’t care to admit this, it turns out that Freud (and those he stole from) were actually onto something.
SSDs are most common in people who have been traumatized. Specifically, prolonged trauma exposure resulting in complex post-traumatic stress disorder (which is also vague and can encompass few or multiple symptoms) is associated with chronic pain and other “medically unexplained” phenomena, such as dizziness, blurry vision, loss of motor control, paralysis, migraines, and the onset of “real” conditions, such as diabetes and heart disease. Fibromyalgia, chronic fatigue, and irritable bowel syndrome are also considered “functional somatic syndromes” because although they can be enormously disruptive, they have no biomarkers.
Those of us whose environments were persistently unsafe may have spent months or years in “fight, flight, or freeze” modes, and this permanently affects embodiment.
While scientists spent centuries shaking their heads and calling “hysterics” liars, witches, and demons, they now have some insight into how external forces affect one’s physiology. Freud was wrong when he focused on emotional and psychological suppression only, but the body does “keep the score.” Those of us whose environments were persistently unsafe may have spent months or years in “fight, flight, or freeze” modes, and this permanently affects embodiment.
Childhood maltreatment, for instance, is linked to “limbic (the system responsible for motivation, learning, emotions, and memory) irritability.” This means that long-term, stress-induced limbic activation has a “cascade” of negative consequences for one’s endocrine (hormonal) system, our sympa- and parasympathetic nervous systems, our neuronal activity, and our gene expression.
Every component of our bodies is impacted by abuse, highlighting the absurdity of mind-body dualism. “Limbic irritability” can manifest as perceptual distortions (perceiving stimuli differently than others do), hallucinatory events, and dissociation (which is its own subcategory of SSD defined by disturbances of “normal” integrated functions of consciousness, memory, or identity). It can also present as epileptic convulsion (which may be invisible to observers but can escalate to full-blown seizure disorder) and, of course, pain.
In rudimentary terms, the “pain dial” in my body-mind, which should rest at “off” unless something happens to induce pain, is always on, and it is cranked way, way up. My “brain-gut” axis is wonky, my baseline for stimuli processing is distorted, and my body constantly believes it is being attacked.
The influx of research on SSD is good because it lends credibility to those who haven’t been taken seriously, but it doesn’t often translate to effective practice. Most doctors I’ve seen in the last seven years haven’t heard of SSD, or they assume I’m exaggerating when I relay the severity of the pain. This has led to them prescribing treatment regimens that have no discernible effect or make the problem (much, much) worse.
Numerous things that have not worked for me
The science on medication therapy for SSDs is inconclusive. Some studies are methodologically flawed because follow-up times with participants are too short, the participant dropout rate is too high, sample sizes are too small, or results are skewed by researcher bias.
Yet antidepressants and antipsychotics are still regularly prescribed to patients with somatic symptoms. For some, they work (though it’s tough to discern whether they impact the symptoms or just the anxiety and depression that tend to accompany the symptoms), but there is no evidence to suggest they’re effective on somatic abdominal pain.
My first visit postdiagnosis was an internal medicine specialist. He questioned me for about 10 minutes before writing a script for three different antipsychotics. The rationale behind this may have been that atypical antipsychotics release dopamine, a pain inhibitor, and contribute to central neural desensitivity. But (and this is a big “but”) I have a bipolar diagnosis (which is also a derivative of childhood trauma and neurological adaptations), and I get manic quickly.
The antipsychotics did nothing for my pain, but the sudden influx of “feel good” chemicals in my system was great. Less great was the massive bout of manic psychosis, the likes of which almost got me killed three months later.
Since then, I have been prescribed antidepressants, anticonvulsants, and various nerve pain drugs, all to no avail. While I have given up on pharmacological therapy (and am understandably afraid of it), it may work for some people, some of the time.
Also suggested by the internal medicine specialist. Also very, very bad for me. I was apprehensive about ingesting a mood-altering substance with my addiction history, and I soon proved that my worries were founded.
As with diamorphine, pot made the pain much worse. I imagine this is somehow related to their emotional properties, in that I feel more embodied (and more connected to the pain), but there is no research on why this happens neurologically.
Regardless, in a matter of weeks I went from taking my first tentative puff of a prerolled joint to popping 40–60 THC pills daily. I was in physical agony, but I was also so hopped up on stimulants, I didn’t really care.
Then — bam — psychosis. I’ve been scared of pot since. And the few times I have smoked it, I’ve felt the familiar pain intensification along with full-body panic attacks, so now I stay away.
Cognitive behavioral therapy (CBT)
Just… no. I dislike CBT for many reasons, but its premise — that “irrational” thoughts can be converted to “rational” ones and that “healing” is “in one’s head” — is incompatible with SSDs.
Trauma lives in the body, and applying “logic” will not change one’s nervous system. The practitioners who’ve suggested it tend to be old (and old school), White, and male, and they almost always imply that I’m “overreacting” when I explain what I experience.
Being told to do CBT and then being called a difficult “treatment-resistant” patient when I refuse is gaslighting, and while there may be some people, somewhere, for whom CBT is useful, I’m not one of them.
There are parallels between this and CBT. I am not safe in my body, so to focus on its sensations induces panic. More than one ill-informed clinician has forced me to do mindfulness meditations (i.e., body scans) in treatment settings, and I’ve either walked out or started crying.
Mindfulness is trendy, and so not only do professionals push it, laypeople do too. It feels insulting when friends suggest it (for the dozenth time), as does the insinuation that I’m doing it “wrong” (am unenlightened) when I try to change the subject.
Dietary changes: I am not allergic to gluten or dairy, and veganism isn’t for me.
Supplements: A futile money suck.
Prayer: Born of desperation and has left me feeling silly.
My lack of solutions is difficult. I worry about being a burden, and each time I bring it up in nonclinical encounters, I wonder if people are bored.
“Seven years!” I imagine them thinking. “Surely she must be over this by now?”
It has been seven years, and no, I’m still not over it. Instead, I manage. At my last job, I had to take hourly or bihourly walks because focusing while seated is only something I can sustain for brief durations of time. Sometimes these walks concluded with me silent screaming in a bathroom stall, but I was fortunate to mostly set my schedule, so no one was the wiser.
I’ve also learned that certain activities take the edge off, but they tend to come with consequences. Alcohol and crack cocaine, for example, are phenomenal pain relievers. The benders I’ve gone on in recent years have been motivated by many factors, one of which is making the sensations stop. Of course I come-to eventually, usually on the precipice of death and having lost everything, so these aren’t the best solution.
Similarly, bingeing and purging distracts me. Again, I do not recommend this tactic because, while effective in the moment, its ramifications are harsh.
It is profoundly unfair that, despite all the work I’ve done to “overcome” certain events, I can’t escape what has been done to me.
What I’ve realized, though, is that these behaviors all release huge amounts of adrenaline, serotonin, and dopamine. I don’t know how this works exactly, but it’s apparent that, for me, intensity overrides pain signals, and there are other ways to achieve this that are slightly less destructive. I run a lot, and I’ve developed a proclivity for violent sex.
I also give myself permission to grieve because it is profoundly unfair that, despite all the work I’ve done to “overcome” certain events, I can’t escape what has been done to me. I feel it almost constantly, and the anguish associated with that isn’t something I’ll get over.
A few things I wish people in my life knew
I’m referring to SSDs specifically, but conversations with other disabled and chronically ill folks suggest these may apply elsewhere — if you’re unsure, I recommend asking.
Understand that it’s always there
When you ask me how I’m doing, know that my baseline is bad. I don’t want to have the same conversation every time we talk (nor do I want you to grow tired of me), so the pain is rarely something I’ll bring up unless you do so first. When I say that I’m “okay,” however, please know that this means that I’m okay aside from the agony that is coursing through my abdomen. I’m never truly okay according to most definitions of the term, and it’s helpful to be aware of this.
Accept that you can’t fix it, and respect me enough not to try
Asking if you can make me herbal tea is sweet, but it’s also incredibly patronizing. I don’t need solutions from you, and unless you’re an expert on the subject (there are none), recommendations like the aforementioned mindfulness feel more alienating than not. I know myself — period.
Don’t compare it to something you’re going through
I want to hear about your life, including your triumphs and your hardships. If we’re close, I want to support you in everything you do. And it’s trivializing to bring up, say, a stomachache and tell me that now you know how I feel. You can’t empathize with this, and I am fine with that. You need to start being fine with it too.
Allow me to be bitter
Not all the time, but occasionally, I’m allowed to be bitter. Again, I’m scared that you’ll abandon me, but every so often, it’s cathartic to have someone bear witness to how truly horrific the pain is. This won’t fix it, but it makes me feel slightly less alone.
People expect that because something has been named, it should have a cure or at least a clear treatment regimen. For an umbrella term that is basically a catchall for “shit doctors don’t know,” though, no such path exists. I am haunted (though my cultural understanding of this is different from the Shamans I’ve enlisted), and I uneasily accept this.
It’s also important to note that between 20% and 30% of people presenting in primary care settings do so with symptoms that are incompatible with known anatomic principles. There are a lot of us, and while most find resolution, some of us do not.
A few years ago I started rubbing my stomach and talking to the pain. Doing so doesn’t alleviate it, but I want my body to know that I respect it for having survived so much.
And in lieu of a pill, procedure, or a “lifestyle change,” that’s the best that I can do.