From the moment COVID-19 reached pandemic designation, Joe McDougall had nightmares. Not, like others, about the potential path of the virus, but about the seemingly inevitable moment at which he’d be asked—or held down and forced—to receive a vaccine. McDougall, now 39, is terrified of needles and a global pandemic meant that for the first time since adolescence, he might not be able to avoid them.
[time-brightcove not-tgx=”true”]Of all of the challenges facing mass COVID-19 vaccination, fear of needles is one of the least acknowledged by public-health campaigns. Even what we know about it is limited. It’s likely that at least 16% of adults worldwide have skipped some medical treatment—mainly annual flu vaccines)—due to concerns about needles. For an estimated quarter or more of those people, the level of anxiety and terror caused by needles coalesces into a legitimate phobia, formally called trypanophobia, that governs elements of their life and interferes with normal functioning.
The exact number of people living with this phobia is nearly impossible to know, primarily because many of them steer clear of medical care entirely, choosing instead to risk missing screening and diagnosis. This avoidance can be far-reaching. People may choose to avoid everyday activities for fear of being injured and requiring needle-related medical care. Some young women have chosen to postpone or even forgo desired motherhood simply because of the health care that pregnancy and delivery requires, according to online support groups.
Fear of needles isn’t about pain
“The fear of needles is greater than the fear of the consequences,” McDougall says. “It’s not about the pain, either.” When he needed to check his HIV status a few years back, he says, he simply couldn’t bear the thought of using the small auto-lancet that came with his at-home testing kit to prick his finger. So, he opted for a mind-easing solution that many would consider far worse—slicing his hand with a box cutter to get the requisite few drops of blood.
McDougall has a difficult time explaining where his fear comes from, but describes it as a sort of existential issue with needle insertion “and seeing that it’s in there.”
Being able to break down a fear of needles requires understanding each and every element of interacting with them that can make a person feel uncomfortable. “People’s triggers are quite specific, and they can differ,” says Jocelyn Sze, a clinical psychologist in Oakland with years of experience treating phobias. “For some people, it’s really the puncture and moving into the skin. For others, it’s this idea of a foreign substance entering their body. It could even be the smell of rubbing alcohol, or the fear of fainting.” Some people, including trypanophobes who work in health care, of which Sze says there are plenty, are truly only fearful of being injected themselves, and have no reaction to seeing or even using needles on others.
But after decades of avoidance and resignation, McDougall and many others like him are now confronting their phobia. To them, the COVID-19 vaccine is that unstoppable force. In the trypanophobia forum on Reddit, where self-identified needle avoiders gather, conversations about treatments, both professional and self-guided, increased multifold starting in mid-2021, many centered around a general desire or need to be vaccinated against COVID. For some, the sudden frequency with which distressing images of needles appeared on their TV screens or social-media feeds alongside COVID news stories was also overwhelming enough to make them rethink treatment. McDougall says he even wrote a letter that spring to his local TV station in Fife, Scotland, begging them to consider using other images, though it went unaddressed.
During the pandemic, “the motivation for folks really increased,” says Sze. “Folks that hadn’t interacted with the medical system in 20-plus years in any way, shape, or form were slowly coming out of the woodwork to get support.” This chance to get to better understand a hidden patient population has allowed experts like Sze to begin reimagining what the experience of routine needle-based care can look like.
Reshaping life-long attitudes about healthcare
It’s not uncommon for children to be apprehensive about needles, and interactions early in life with the health care system can easily set the tone for lifelong attitudes toward medicine. In many cases, says Sze, trypanophobia begins with a key incident in youth. “When you look into peoples’ history with needle phobia,” she says, “most people can remember vividly where they had a moment at a young age where they felt very out of control and their autonomic nervous system kicks in.” This fight-or-flight response, she adds, can become deeply ingrained over time, in some cases remaining long past the initial memory of the incident that caused it. In some cases, the fear is learned simply from watching an ill family member undergo treatment.
Studies show that the numbers of people suffering from the remnants of childhood needle-based trauma could be increasing. A 2017 study showed a strong correlation between the number of childhood vaccines given on the same day and later preadolescent needle fear around age 10. The standard number of vaccines given to children increased throughout the 1980s and ‘90s with the development of reliable Hepatitis B and Varicella, or chickenpox, treatments among others. “Getting four shots in a row at age two versus before, having to get only one or two shots per visit can increase that experience of distress,” for infants and toddlers, says Sze.
For Alex Coyne, a 45-year-old code enforcement officer in Pittsburgh, the phobia began around age 11, when he walked into a fire escape and had to get stitches near his eyelid. In a common feature of many inciting incidents, Coyne remembers the practitioner having little patience for his apprehension, instead telling him to “just suck it up,” he says. Today, his resistance feels like “a control thing,” he explains. “I’m a grown man, and you’re not going to do this to me again.”
Just being in a doctor’s office makes Coyne nervous. “I don’t trust them. I want to, and a lot of them mean well, but to me, they don’t care,” he says. “Intellectually, rationally, I know that they do. But that’s where that 11-year old brain kicks-in. And it says, ‘they’re going to toss you around, and they are going to hurt the hell out of you and not care.’“
For some, this need for control leads to an expert-level understanding of needle and injection types. Trypanophobes explain it as a sort of know-thine-enemy approach to coping with an otherwise frighteningly ambiguous fear. As a result, online spaces dedicated to trypanophobia often contain encyclopedic levels of information about which procedures require which width implements and how deep into the skin or muscle different needles need to go to deliver medication.
To Sze, needle phobias are a public health issue, a perspective she’s been encouraging clinicians to embrace since the start of the pandemic. “In the psychotherapy world, we’re often using this one-on-one treatment model approach, and to me that felt very insufficient to meet the demands of what was happening globally,” she says.
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With the help of colleagues, Sze started the I Don’t Like Needles project, designed to offer free treatment referrals and resources to those struggling with needle phobia. From October to April of 2022, the project offered free counseling sessions to those hoping to get vaccinated. Today, Sze and fellow psychologist Julie Lustig are working with Sutter Health’s California-based sensory vaccination clinic, where specialized care can be given to individuals, many with autism, who are unable to be vaccinated in a normal clinical setting. They are piloting best practices and principles they hope to share with health care providers more broadly. “Because this has been a pretty silent population that has avoided a lot of medical care, there hasn’t been enough advocacy around what their needs are,” she says.
The fear is gradually being talked about more. In 2022, the U.S. Centers for Disease Control added a few pages about needle fears and phobias to their website, including guidance for both adults and the parents of young children.
The test clinic that Sze works with uses a wide variety of interventions. “There’s some simple stuff like being able to use ice or vibration to block the pain signal or letting the person know that they don’t have to watch what’s going on—you can watch a YouTube video if you’d like, or listen to music,” Sze says of the test clinic. “You can have the option of a chair that kind of lies flat so you can lie down if you have a history of fainting.” The key, she says, “is just working in that patient advocacy role—checking in and not assuming that this person doesn’t have needle phobia when you are vaccinating them.”
COVID forces the issue
McDougall and Coyne both sought out therapists in 2021 with the goal of being able to receive COVID vaccines. For Coyne, whose wife is immunocompromised, it felt like he had no real choice in the matter. “It was like, look, you’re gonna have to face this,” he says.
He sought out a therapist in his area, and found one who agreed to help him, suggesting that they try eye movement desensitization and reprocessing (EMDR) therapy, a newer technique commonly used to treat traumas that’s also gaining traction in the treatment of phobias. Coyne’s specific memories attached to his fear made him a good candidate for EMDR. Once he made the decision to seek help, he says, he’d have tried just about anything. “I can handle a lot,” he says, “And it’s ridiculous to me that I can’t rewire my own brain to not be afraid.” His children, he says, are fully vaccinated and have no issues with needles.
Coyne says his roughly half a dozen sessions with the therapist didn’t help much, but he was determined. That August, armed with a Valium prescription from an understanding primary care physician, his wife for support, and headphones playing his favorite songs from Finnish metal band Nightwish, he went to his local pharmacy and got a Pfizer mRNA shot.
“Before it got done. I couldn’t imagine life after it,” Coyne says of the apprehension he felt. “To me, life wasn’t going to be the same after this was done. And I knew how ridiculous that was. but it was such a monumental event.” The second dose, three months later, was so much easier, he says, that he didn’t even bring anyone to the pharmacy with him. But he refused a flu shot offered by the same pharmacist. For Coyne, any injection other than Pfizer’s COVID shot felt, and still feels, like an entirely different beast. “It doesn’t make any sense,” he acknowledges.
When McDougall called the U.K.’s COVID helpline to ask about vaccination accommodations for his phobia, he says he was passed from supervisor to supervisor and talked to “like a freak.” Eventually, he decided to look outside the National Health Service and found a therapist who specialized in exposure therapy. Exposure therapy is by far the most empirically effective treatment for needle phobias, and involves making a thorough list of an individual’s triggers from least to most severe before eliminating them one by one through desensitization exercises. For McDougall, this meant repeatedly watching videos of specific injections—as well as ordering a full set of commonly used needles from a medical supplier to touch and look at.
Thanks to a friend who worked at a local vaccination clinic,McDougall was able to make an appointment to be vaccinated alone in a side room at the clinic rather than having to sit and wait where he’d have to watch others get shots before him. Without that accommodation and his own preparations, it’s almost certain that he’d never even have made it through the clinic door. “Before exposure therapy, I’d driven up to a vaccination center, had a panic attack in my car, and come home,” he says. Like Coyne, McDougall found that going back for the second dose was much easier.
Coyne, McDougall, and others who received COVID vaccines after decades of avoiding the health care system have found themselves grappling now with a decision: Continue the grueling work to break down their fear even more, or celebrate the victory and retreat back to an avoidance of non-acute care? McDougall returned to exposure therapy six months ago, and though Coyne still hasn’t tried the approach, he’s toyed with the idea. “I do think about getting older,” he says. “My wife wants me around and I want to live a very long life with her.”
Coyne and others understand that the doctor’s office is inevitable—and they hold out hope that better accommodations will exist by the time they get there.
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