Living with Bromhidrosis: A Personal Struggle

If Hayat goes out to eat, she’ll choose a table far from others, ideally near a door or an open window. She also tends to avoid crowded places like cinemas or airplanes, even if it means paying extra for space – anything to stay away from being too close to others.

She attributes this to a long-standing insecurity. “I still have that paranoia… It’s just in my head because of everything I went through,” she explains.

For more than ten years, Hayat, now 66, battled with bromhidrosis, a condition characterized by chronic body odor. While bromhidrosis can refer to body odor from various causes, it often stems from a bacterial imbalance or other health issues.

For those suffering from this condition, it’s not simply about bathing more frequently or switching to stronger deodorants; the body’s own processes can be at odds with them, leading to distressing consequences. “Fifteen minutes after a shower, they’ve already started smelling,” explains Chris Callewaert, a senior research fellow at Ghent University and one of the few experts on the topic worldwide.

Callewaert notes that bromhidrosis results from a natural bodily function that goes awry, often involving the apocrine glands. These glands, located mainly in areas like armpits and groin, secrete substances that, while initially odorless, can lead to body odor when digested by bacteria on the skin.

In cases of apocrine bromhidrosis, some part of this biological process is disrupted. This could manifest as overactive glands or an abundance of bacteria that produce strong odors. Body odor can emerge suddenly due to various factors like puberty, changes in microbiome, metabolic disorders, or even as side effects of medication. Once established, these odors can be challenging to address. Callewaert states, “It’s often multifactorial and difficult to trace back to a singular origin.”

For Hayat, the onset of her condition coincided with menopause and excessive sweating (hyperhidrosis). At 48, after having an ovary removed, her estrogen levels plummeted. “After that, life started to change. It was absolutely disruptive,” she reflects.

She felt overheated constantly, “burning inside” even during frigid New York winters. On the subway, she would wear sleeveless tops while others bundled up in heavy coats. “People looked at me like I was crazy,” she recalls.

But the frustration didn’t end there. She also dealt with severe body odor from her armpits and other areas. Fellow commuters expressed their discomfort openly, covering their noses or even verbally harassing her. “It was awful, a total nightmare,” Hayat says.

She understood why people reacted strongly: “It’s normal – you don’t want to be next to someone who smells bad.” Despite spending thousands of dollars on treatments and seeing multiple specialists, relief was elusive. She recalls consulting endocrinologists and gynecologists, desperately seeking answers about her body.

There isn’t a clear threshold defining when bad body odor crosses into bromhidrosis, making it hard to gauge its prevalence. A review noted it is common, particularly in the West, and significantly impacts the social and mental health of those affected. Unfortunately, focused research and resources on this issue are scarce.

“It is underserved,” says Angela Ballard, a registered nurse and the communications director for the International Hyperhidrosis Society. The organization, initially focused on excessive sweating, has widened its scope to encompass bromhidrosis and body odor due to the frequent overlap.

Ballard adds, “There isn’t much information out there, which is telling. People feel ashamed. They don’t discuss it with their healthcare providers or friends.”

The stigma surrounding body odor continues, despite it being a natural aspect of life from puberty onward. According to the IHS, about half of the 1.6 million women entering menopause annually in the US experience heightened underarm sweat and odor.

Diagnosis of bromhidrosis often hinges on “the distress it causes a person” and how it affects their quality of life. Ballard points out how it can impact self-esteem and social interactions.

Though there are some strategies to alleviate the issue—from using antibacterial soap to hair removal methods—results can vary tremendously. Innovative solutions are continually emerging, like miraDry, a device that eliminates sweat and odor glands in the armpits and has shown effectiveness in managing both hyperhidrosis and bromhidrosis.

Despite these options, even a blend of approaches may have limited effects. The anxiety and self-doubt stemming from the condition can present additional challenges. “You feel like people are judging you,” Ballard notes, “even when you’re trying everything.”

Many adjust their lives to avoid potential embarrassment, from choosing remote work environments to skipping social events. Ellie, a 30-year-old who faced hyperhidrosis since childhood, struggled with body odor as she aged. She wanted to teach but felt incapable of standing in front of a class feeling sweaty, so she ended up in accounting instead.

Though some find their relationships substantially affected, Ellie notes her husband has always been supportive. She had concerns about passing on her condition to her daughter, but she ultimately embraced motherhood, determined to advocate for her child if needed.

Ellie has developed personal coping mechanisms, like wearing specific fabrics and always carrying a change of clothes. “I feel like I’ve tried every deodorant,” she admits.

Inevitably, assumptions from others complicate matters. Many think those with body odor simply don’t care or are unaware. “Don’t think we don’t notice. We’re likely trying everything,” she expresses.

Callewaert’s findings suggest that those conscious of their odor often pay more attention to personal hygiene than others. Nevertheless, this obsessive pursuit of controlling odor can sometimes worsen those very conditions. “They have stress, and that creates odor, which increases their stress – it’s a vicious circle,” he elaborates.

Over time, the impact of bromhidrosis can transcend physical, leading to isolation and mental health struggles. Callewaert explains that individuals might experience levels of anxiety or depression, ultimately resulting in a reduced quality of life.

Hayat has steeped her life around managing others’ discomfort. To avoid public transport, she learned to drive and began flying business class for more space. “It was a financial sacrifice, but for my wellbeing, it was worth it to be as far away from people as possible,” she explains.

While her family insisted there was no problem, Hayat trusted her public feedback more than their reassurances. “They love me,” she notes, “so I doubted their perspective.”

Her faith was tested; she often turned to the Bible for comfort. “I questioned, ‘Why me? Why do I have to go through this?’” she recalls.

Her world grew smaller. “Before menopause, I enjoyed the theater, movies, dancing, restaurants… Afterward, I stopped all that,” she says, limiting herself to just work for over a decade.

Her workplace wasn’t much easier. Colleagues were dismissive, treating her with disgust; one even sprayed air freshener when she was present. It reached a point where Hayat contemplated suicide. Ultimately, she sought help from human resources, which helped her find a more supportive environment.

Later in her job, as remote work practices expanded, she adapted better to managing her symptoms. “I discovered ways to cope,” she asserts.

Discussions about body odor often gloss over the genuine challenges tied to the condition. Even medical professionals have been known to trivialize it, suggesting patients merely use more deodorant. Callewaert notes that while this problem might not seem life-threatening, it includes the potential for serious underlying health issues.

In many cases, severe body odor emerges from microbiome-related issues. Diets high in processed foods and low in vegetables can worsen the situation. “Living healthily can help minimize odor,” he affirms, acknowledging stress as another contributing factor.

Adjusting microbiome makeup is usually slow, and many deodorants can unintentionally worsen odor by eliminating beneficial bacteria that combat stronger odor-causing types. Callewaert contends that these “underarm cosmetics,” prevalent only in recent decades, have contributed to intensified body odor at a population level.

As a potential remedy, he is working on a new line of probiotic deodorants. Meanwhile, Ballard advocates for embracing the natural occurrence of body odor and extending compassion towards those who struggle with it. Instead of rushing to judgment, she suggests considering individual circumstances.

“Maybe they have bromhidrosis. It might have taken enormous effort for them to simply get out the door,” she emphasizes.

Now recently retired, Hayat acknowledges the bullying she faced regarding her condition impacted her mental state just as much as the physical symptoms did. Fortunately, after a decade of menopause, her symptoms gradually improved. “Thank God, it got better,” she says, “though it’s still not fully managed – I’ve just learned to cope.”

Hayat reinforces the need for empathy—no one is immune to body odor. “You can smell great now, but life changes; you might face it one day.”

All names in this account have been changed.