On January 16, 2013 my mother committed suicide. She was 55 years old, just two months shy of her 56th birthday. The suicide was her second attempt in three months following an eleven-month illness that several physicians and specialists failed to correctly diagnosis until eight weeks before her more successful suicide.
While her physical illness was rare and particularly aggressive in her case, leaving her struggling with great pain in her last days, it was her mental health condition that contributed to the lack of seriousness in which my mothers’ physicians took her claims of great suffering.
You see, 13 years before her death, my mother was diagnosed with post-traumatic stress disorder, had been on disability for most of that time, and had a long, well-documented experience working on her illness with mental health professionals throughout her city. She complained of severe physical pains, demonstrating and documenting her symptoms with great specificity to each doctor, desperate to be heard, to be believed, and received in turn the kind of dismissive pats you give a child trying to get out of bedtime.
The fact that she was poor, a woman, and black didn’t help her plight in the quest to receive quality care. The jury is no longer out on whether white men’s health care concerns are taken more seriously than black women’s by medical professionals in the United States; multiple peer-reviewed studies have already told the tale and revealed that when a black woman complains of serious health symptoms like heart pains and requests tests, she’ll be more likely to be met with excuses and effusive denials of her concerns, or worse, a shrug.
She is more apt to experience this form of “benign” medical prejudice than either her white male or female counterparts, even more than her black brothers. Nor is it a secret that poor people generally get crappy health care in America, when compared to privately-insured upper middle class professionals. Luckily, my mother lived in a state with one of the best publicly funded health care systems in America and she was a long-time Medicaid recipient. But, none of these societal golden tickets of disenfranchisement got her dismissed as readily as having a documented history of mental illness, one that included several brief psychiatric hospitalizations over those 13 years.
What those 13 years of mental health medical history showed was a woman who’d fought long and hard to keep those hospital stints succinct, patchwork jobs just to re-tighten her up sufficiently enough to remain functional enough to raise two children on her own off of less than $900 a month in disability, not including what support I, as her better-to-do elder son, could share in emergencies, holidays, and for school obligations for her and my siblings. What those 13 years of case worker charts and therapist notes showed was a woman who’d largely been successful at keeping the worse of the worst at bay long enough to manage her home for 18 years and the mental health issues of two of her own children over the last 10 of her life, one with high functioning Asperger syndrome and the other with bipolar.
What those 13 years of records showed was a woman who didn’t have a history of hallucination or delusions of grandeur, wasn’t prone to exaggerating the extent of a crisis given her long familiarity with them, and hadn’t a reputation among her mental health providers for being either unduly difficult or insincere, despite some of them having used her and her children as treatment guinea pigs over those years, constantly trying to get those meds and balance those side effects “just right,” until my sister simply refuses to take them anymore, preferring to white knuckle her crisis periods instead.
What those 13 years should have shown those medical professionals my mother visited her last year was a human being who’d spent her life trying to be better, to be whole. Unfortunately, based on their treatment of her, both alone and in the company of me and my siblings, was a statistic that was too often perceived to be taking up their time with wild stories of fatigue, fogginess, “firey” headaches, a sudden allergy to seemingly everything, and constant, acute digestive issues. Despite none of her symptoms or hypochondria having a single thing to do with her PTSD diagnosis, as her doctors should have known or a quick Google search could have told them. Yet, for many of them, she was simply seen as a crazy lady.
You might feel that doctors looking at a chart and barely humoring my mother when she complained of not being able to keep food down was reasonable skepticism given her symptoms claims and mental health history. How do you feel when I tell you that skepticism persisted even after she’d lost over 40 lbs in three months, 50lbs by four, 65lbs by her seventh, and 80-85lbs by the time she tried to commit suicide the first time?
Lucky for my mother, her love of food prior to these digestive trials had made her a rather robust woman. Despite having average blood pressure, blood sugar, cholesterol and all the other things one would expect to take out a black woman her age, my otherwise seemingly healthy mother had the weight to lose. Still, at such a rapid rate, the results of such drastic and unintended weight loss were unsightly and severe and my mother, somewhat of a vain lady who’d long been considered “cute,” buckled at the sight of the sagging skin and raccoon eyes that had begun to greet her in the mirror.
Fear consumed her life with every pound lost and every new burning headache so strong she took to wrapping her head in ice packs and sleeping in sun blocked rooms, robbing her of any of the pleasure she’d long derived from a good book, film, or song—often the very tools that had allowed her to cope with her lot in life since her PTSD diagnosis. Some days she was fine, but those days were haunted by how she’d feel later that night, how’d she’d be once she woke back up in the morning, since every day, sometimes every new hour, brought the risk of new flare-ups of acute pain and suffering.
Since she couldn’t keep any of the foods she loved down, she stripped her diet of all things fried, white, wheat, sugared, salted—whatever the books and websites she maniacally trolled told her was the answer to her ills and the source of her pain. In time, every air vent and pipe would be professionally cleaned, air purifiers set in every room, hypo-allergenic sheets and blankets adorned every bed, the carpet pulled and newer healthier carpet lain.
All artificial shampoos, conditioners, lotions, toothpaste, deodorant switched out for organic brands and natural oils and cleansers with strong internet reviews purportedly from other people struggling with a variety of symptoms similar to my mother’s. None of that helped. And by fall, she’d spent some 22K, most of the money she’d come into that spring because of a clerical error that had kept her from receiving her full entitlement benefits over the course of her mental illness.
What had started as a viral infection she thought she’d initially thought she’d received from her baby granddaughter in February of 2012 had rendered her barely able to stand or walk for more than a few minutes at a time by June 2012. By the summer, she was largely using a wheelchair to get around to the doctor’s appointments that littered her schedule like chess pieces across the board. She grew more desperate by the day, entering her home was entering a woman in full fight mode for her health and survival. From books to vitamins, a wall chart to track her progress, whatever it took to be her own best health care advocate for the doctors who seemed apathetic at best and disbelieving at worst.
In time, the general practitioners and medicine internists gave way to specialists who specialized in every part of my mother’s body, each with routine tests for her symptoms, with more special tests having to be pleaded for (and when one doctor refused my mother, she’d find one who would accommodate her requests for well-researched screenings, to see, to ensure something wasn’t being missed).
As each of God’s helpers turned up empty, their looks turned colder, more stone-faced, less humored by my mother’s insistence that she was not making up these symptoms, that she was not, ironically enough, that kind of crazy. But, those tests found nothing abnormal in her blood, urine, stool, saliva, genitalia, internal organs, et al, they’d taken to blankly starring at her, guessing what could be wrong (when they bothered to even guess), and writing her a scrip for a drug almost each time that didn’t work and she likely didn’t need. In her desperation, she learned to take them anyway, to give each prescription a chance, even as each made her sicker than before, afraid she’d again be listed in her records as “difficult.”
In the course of her search for answers early in her illness, she’d directly refused a drug once that she knew had previously made her sick and later found out that doctor had written that in her records: “difficult; refused prescribed treatment option.” Doctors shared her electronic medical records among one another.
She tried to explain to each specialist that she had become highly “med sensitive” in the course of this weird illness, experiencing severe allergic reactions to their prescriptions, some she’d taken before this condition without incident and even success. They told her to cut the drug in half or in quarters, to try, and if she dared protest further, it was clear they’d wash their hands of her. And, she needed answers, and these were the folks who were said to have them. While they didn’t believe in her, she never stopped believing in them in their gifts. Each new test or prescription believed to hold the key to her diagnosis and a treatment path that would relieve her of the suffering, to just let her go back to being a woman who struggled with the PTSD that never left when this new intruder to her person appeared.
At least once she was misdiagnosed. This time by an ENT (an Ear, Nose, and Throat specialist) who placed a tiny camera up her nose and told her that all she’d seen before were quacks, that the sinus inflammation was obvious and severe and was likely the cause of her head pressure. She was told her only two options were surgery with a recovery dependent on pain pills or a drug that had previously made her so ill, she had to be hospitalized (this doctor was later disproved by another specialist).
My mother openly began considering suicide at this point and taken to seeing separately both an Accupressurist and Accupuncturist; maybe the East could do what the West couldn’t. They offered relief, but only of the most temporary kind. Given the frequency of her visits, once granted some minor reprieve, even her Eastern practitioners seemed to fear they were taking the money of a woman unhinged, exploiting her for profit. It didn’t matter, soon they too stopped working as effectively and efficiently as they once had, skipping steps in their processes, and she’d noticed the difference in their methodologies and her results. She was back at square one and terrified no one would ever believe her.
At this point, I’d joined those who believed my mother psychosomatic. I’d believed her PTSD diagnosis when her siblings and mother hadn’t (some said she needed more religious faith, others accused her of gaming the entitlement system—none wanted to believe the eldest sister who’d partially raised them in trying circumstances had succumbed to a real diagnosis and 13 years of seeing various doctors who’d co-signed her PTSD). I couldn’t join her as a signer on this health issue. Being a public health specialist, I too believed her skeptical doctors by the time we got to the fifth and sixth specialist. I’m a man of physical evidence and they kept not finding anything wrong in her physiology or the diagnosis one doctor might give would later be proven wrong by another doctor, supposedly better skilled – none of the diagnoses covered all of her symptoms.
After an MRI, an endoscopy, and a colonoscopy all found no abnormalities (the latter two I was present for and saw the doctor’s dismissive looks and heard the tolerant tone), my mother had three days of headaches so severe she couldn’t sleep. This led to the first suicide attempt; she’d been at this for nearly ten months with no answers. Ironically, it was only after she’d attempted suicide that the doctors in her hospital took a real hard look at her symptoms and discovered that she was textbook for someone with a really severe case of chronic fatigue syndrome, a medical name that mocks the full scope of potential symptoms and the level of suffering those with the worst strains of it can endure. She finally had an answer. She wasn’t crazy, at least not that kind of crazy. I apologized to her for eventually yielding to doubt. No such apologies were forthcoming from the medical industry over her torturous ordeal with their system, just a word on her long-term prognosis.
Be careful what you ask for. Chronic fatigue syndrome is relatively new in the world of known medical maladies. While suspected to be viral, there is no definitely known cause, no known cure, and no main course of treatment known to be effective. It is mostly treating the accompanying depression known to follow the disease as a result of the symptoms and the loss of a victim’s quality of life.
Some treatments try to restore some of the energy loss the best they can, but patients’ never feel rested no matter how much they sleep and their symptoms can worsen. My mother was told she could live as she had anywhere from five years to life. It was a living death sentence without the peace of an actual death. My mother couldn’t imagine five more years like her last one and six weeks later, some of her most painful and least mobile, she joined thousands of medical and mental health sufferers and took her own life.
She had many feelings about her journey to self-murder in a quiet hotel room all alone, so her youngest son whom she lived with wouldn’t be the one to have to find the body and live with that memory. Beyond feeling cornered and isolated during those rollercoaster months of tests, financial waste, and indefatigable hope, one of the most present feelings was one of being failed by the medical industry at every turn. My mother had the sense that while she still would have ultimately received that same awful last word on her condition, she’d have at least been spared the indignity, frustration, and psychological terror of not being believed, of being made just another “crazy.” My mother had been text book in her medical condition, each symptom cleanly laid out for anyone who dared to scratch deeper, investigate more. She’d tried, but they hadn’t. Not really. She wasn’t the medical professional, they were.
Some told her that her symptoms were ones of depression, the irony of depression being a chronic fatigue syndrome symptom is not lost on me. She kept telling them that before her new illness, she’d had every reason to be happy, to want to live: the worst of her PTSD was lifting, she was considering going back to work for the first time in more than a decade, she had a brand new granddaughter who’d given her new reasons to want to be around, she finally had a little money for the first time in years, and her children were grown and doing well enough to manage their own diagnoses for once. Then this hit. They didn’t hear her. They only heard a poor, black crazy woman complaining of the pains and ills of her sad life. And, who really wanted to hear more of that familiar song and dance? Who indeed?
L. Michael Gipson is the Music Editor at SoulTracks.com and Associate Editor at Lambda Literary. His work can most recently be found in the anthology “For Colored Boys Who Have Considered Suicide When The Rainbow Is Still Not Enough: Coming of Age, Coming Out, and Coming Home.”