My heart drummed in time to my racing thoughts, which repeated an increasingly urgent command. Just. Fucking. Pee. But instead of performing, my pelvic area grew numb. Total drought.
I looked at the woman who was standing in the Memorial Outpatient Behavioral Health bathroom, staring at me as I tried to urinate.
“I don’t get it,” she’d been saying, as I tried to calm my anxiety. “I can pee anywhere. Don’t matter where I am: If I gotta go, I gotta go.”
“I don’t think I can do it right now,” I said. “Maybe I need to drink more water and, like, smoke a cigarette or something.”
“Alright, I guess,” she replied with her thick Brooklyn accent.
She watched, annoyed, while I pulled up my panties, tugged down my skirt, and sidled past her out the bathroom, empty cup in hand.
“You’re lucky this isn’t probation,” she said. “That would be counted as a dirty. You don’t get no second chances in probation.”
I nodded as I handed the cup to the nurse. He looked at it curiously.
“She’s gonna drink some water and try again,” the peer counselor explained.
But I would never succeed. Not the next two times with that same peer counselor, nor during my two attempts with a facility nurse—nor a single drop while being watched on two occasions by a social worker who was known for calling child services on her clients.
This happened even when my bladder felt so full it hurt, when I needed to pee so badly that it gushed out as soon as I was alone and not holding a little plastic cup under my crotch.
A Common Problem, an Unnecessary Imposition
I am not alone in this difficulty. The condition is called paruresis, or colloquially “shy bladder syndrome,” and described as a form of social anxiety in which the sufferer finds it difficult or impossible to urinate around other people. Essentially, you’re unable to relax the necessary muscles. It is a spectrum condition—worse for some than others—and can be so severe that the person is unable to urinate if they are aware of others nearby, such as in an enclosed public restroom stall, or even at home with guests over.
According to the International Paruresis Association, an estimated 21 million Americans suffer from the condition—about 7 percent of the United States population—and 220 million people worldwide.
So why was an observed urine drug screen imposed on me as a requirement for receiving buprenorphine?
“I think it’s extremely shaming,” said Dr. Justine Waldman, the executive director of REACH, a harm-reduction oriented health hub in Ithaca, New York which prescribes buprenorphine and does not perform observed urine screens. “It tells a lot about what’s going on in the relationship between the provider and the patient … with a witnessed drug screen, the trust between the patient and the provider is zero; there can’t be a provider-patient relationship.”
Waldman also told Filter that, “from what I understand from people, it’s not that hard to fool an observed urine screen.” She described a process involving a bag of urine tied to the leg and then passed through “some sort of accessory”—presumably something like the whizzinator, a synethtic urine device marketed as a sex toy, costume piece and prank accessory. During my ordeal, a (notably male) friend suggested I insert a condom filled with urine into my vagina and find a way to secretly puncture it.
This makes the process doubly problematic: Providers falsely believe they are receiving a sample that could not possibly have been adulterated, while patients are unnecessarily subjected to a practice that is shame-inducing and uncomfortable.
At some programs, observed screens are assigned as a sort of punishment. At others, all drug screens are observed.
As a provider that doesn’t demand abstinence from its patients, REACH is a rare exception. It only uses non-observed screens to ensure that patients are taking their buprenorphine—mostly, says Waldman, out of concern that that the DEA might accuse them of assisting in drug diversion. Patients are never penalized for drug test results, nor for being unable to provide a sample. In these cases, Waldman says, people are just told that they will be asked to provide a sample next time—and invited to have a conversation about how the program can better serve their needs.
Stephanie Papes, the founder of Boulder Care, an Oregon-based telehealth buprenorphine programe, also finds it unnecessary to use observed urine screens. While their tests are observed by video, they use oral fluid testing instead of urinalysis, involving a simple mouth swab. Papes said that patients “convey they find it easier, more convenient than their previous treatment program,” adding, “We view lab testing as just one more data point to inform different treatment strategies we can try in order to find what works best for the people we care for.”
However, from what I can see, most drug treatment programs—both those that use medication and those that do not—do perform observed urine drug screens. At some, they are assigned as a sort of punishment if a patient’s behavior is deemed “suspicious.” At others, all drug screens are observed.
Bill Kinkle, an outspoken harm reduction advocate and a service coordinator at Pathways to Housing in Pennsylvania, says that his addiction treatment provider not only requires observed urine tests, but also pats down patients before they enter the bathroom.
“I don’t have issues urinating,” he told Filter. “But being forced to be watched after being searched and treated as though I was in jail causes significant anxiety and retraumatization symptoms. All based on the presupposition that I’m a liar.”
Kinkle, who is working to get his nursing license reinstated, has for the past two years sent reports to the nursing board explaining why this practice is so harmful—especially to survivors of physical or sexual assault like himself. He only recently received a written reply. It referred him to an outside provider to address his trauma history.
Tara Sheppard, a stay-at-home mother in Nova Scotia, Canada, is required by her methadone provider to submit to observed urine screens twice a month. “When I try to start going, my heart [starts] pounding and my chest will get tight and I’ll start feeling panicky,” she told Filter.
She is allowed to sit in the waiting room and drink water if she can’t go, but cannot leave the building—and must submit a sample in order to receive her medication. “Normally if I go in at 9 am for an appointment, I’ll be there until, like, 12,” she said.
“I was told that if I absolutely couldn’t go, they would withhold my meds for the day.”
Some providers are now using cameras, instead of live humans, to witness urine screens. Three patients at different methadone clinics around the US described to me how their facilities do this.
Nikki, who asked that her last name not be used, has been in methadone treatment in Maine for about seven months to treat addiction to heroin and fentanyl. She was initially unaware that her methadone clinic had a camera in one of the bathrooms, she told Filter—and used it several times before she found out. The counselors assured her the camera was only turned on in the case of observed screens (to which she has never been subjected). But its presence still makes her nervous.
“I was told one day to just use that one for my test [because the other bathroom was in use], and, ‘It’s ok, they won’t look,’” Nikki recalled. “Just the thought that someone could do anything they want and I’d be none the wiser kinda felt uncomfortable and brought me back to that place mentally of being an addict and telling myself, ‘This is ok, it’s normal.’ Just going with whatever as long as I got what I needed. But there’s that other part of you that’s screaming, ‘This is not ok!’ So you have this battle raging.”
“On top of that,” she said, “I was told that if I absolutely couldn’t go, they would withhold my meds for the day and write down that I was non-compliant with the test.”
An Ordeal That Put My Life at Risk
At Memorial, all clients were subject to random urine drug tests, but we were typically allowed to provide our samples in private, unless someone had a court order stating otherwise.
In early September, I was required to take an observed drug test because I had been absent from the treatment facility for a little over a week. That included four days when it was closed—for the weekend, and in anticipation of a hurricane—as well as two days when I was not scheduled for treatment. So, in reality, I had only missed three days of treatment—during which I had informed the counselors that I was home sick with flu symptoms.
Although no one expressed any suspicions to me during my absence, when I returned—voilà!—I could not get my medication or attend therapy until I peed into a cup in front of an employee.
It didn’t make sense. It wasn’t fair. It felt, to me, like a power play.
Of course, paruresis is not the only reason why someone might be unable to urinate on command. Medical conditions, like a urinary tract infection or prostate enlargement (common in men over 50), and some medications can also cause urinary retention—including opioids like buprenorphine.
You might expect medical providers to be alert to the many physical and psychological factors that can prevent people from producing urine on demand. My own provider was part of a comprehensive medical body; patients who showed even the mildest symptoms of physical distress during treatment hours were regularly sent to the affiliate hospital. It would have been simple to send me for an evaluation, or to administer another type of drug test, like a blood sample or a mouth swab.
In fact, the American Society of Addiction Medicine published a drug testing guideline in 2017 which states that observed urine testing can be distressing for patients with a history of trauma, a population in which I am included. It noted, “Given these limitations, providers should utilize other strategies—either in addition to or instead of observed collection—to mitigate urine sample tampering.”
I eventually ended up lapsing on heroin—a predictable outcome when access to buprenorphine is suddenly withdrawn.
Instead, my counselor chose to punish me for something that was beyond my control—ultimately endangering my life by withholding medication upon which she knew I was physically dependent.
After my seventh humiliating and unsuccessful attempt to provide an observed urine sample, I told her that her unwillingness to work with me was making me feel hopeless. She replied that she was working with me by allowing me to try with different witnesses—and that was as far as she was willing to go to meet me.
I eventually ended up lapsing on heroin—a predictable outcome when access to buprenorphine is suddenly withdrawn.
It was a poor choice, especially in the context of having an open child services case, but I was desperate. I thought that maybe if I could tell them what happened when they denied me medication, and give them the information they seemed to be expecting from my urine, I could get the continuity of care that I needed and wanted.
But even after I admitted using to my counselor, she still insisted on getting that observed urine sample before I could get medication or rejoin my peers in group. For hours, she refused to even sit down and have a conversation with me until I gave her some pee.
She also banned me from entering any part of the building besides the waiting room without an escort. When a few peers sat down with me in the waiting room to see how I was doing, the receptionist eyed us as we chatted.
A sinking depression lay over me during those hours in the waiting room. I began to feel like I was, at best, a dysfunctional person because I couldn’t pee on command, and at worst some kind of toxin, whose mere presence was a danger to the other patients.
This would be bad treatment practice in any context. But the person making this decision had for several months listened to me discuss my fears of exclusion, my feelings of personal inferiority, and my struggles with social anxiety. In that context, her insistence that I must pee in front of another person or have both my medication and social privileges withheld felt downright predatory.
I was ultimately discharged from treatment, without a last dose of buprenorphine or a timely referral for follow-up care elsewhere. Those days I missed due to sickness were given as the official reason. But the ability to provide an observed urine screen was mentioned as crucial to receiving care—even though I had gone through six months of successful treatment without providing one.
When I look back on this experience, it feels like psychological torture. I am still under mandate with my child services case to complete substance use treatment, but I have found myself unable to make an appointment with another provider. I am terrified that they will demand an observed urine sample with the same callous indifference.
How many other patients have been scared away from care by this harmful and unnecessary practice?
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This content was originally published here.