Finally, Dhena (24) thought when she recently had an appointment with a new female GP. She would probably take her period pains seriously. But no. “She started sighing before I even uttered the word ‘menstrual pain’,” says Dhena. “Some women just have this,” she said. Had I already tried the pill?”
Fainting and vomiting
Dhena has suffered from extreme menstrual pains since she was 11 years old. She has been warned about it by female relatives, but does not know what she is experiencing. Sharp cramps in her lower abdomen, back pain, sweating, tremors, dizziness, diarrhea. She throws up and faints. That has happened every month since then. Dhena is used to it by now, but it is annoying. “Especially when you’re out and about.”
The communication advisor tries to take the pain into account in planning. But that doesn’t always work. “Recently I was out when the pain started. An ambulance was even called in. Everyone thought I’d been on drugs. I’m not ashamed of it anymore, but it’s not nice when people see you like that. And it can also be dangerous. I’ve been unhappy before.”
nothing helps
In recent years, Dhena has been taking painkillers that help a little, but not much. When she was thirteen she went to the doctor for the first time, who immediately prescribed the pill. “That didn’t help much either. In addition, I get huge hormone fluctuations and I gain a lot of weight. In the last ten years I have sometimes used the pill, but I prefer not to have hormones.”
The caregivers Dhena speaks to all say the same thing: “That’s just part of being a woman.” “Try the pill or a spiral.” Or: “You are still young, it will pass once you have had children.” She would prefer to go to an expertise center for endometriosis. In this disease, there is tissue that resembles endometrium outside your uterus. But for the expertise center you need a referral. Dhena won’t get that.
Similar, but not the same
Dhena is one of the care recipients who shares her personal story in the traveling exhibition ‘A person comes to the doctor’. The exhibition can be seen at Utrecht Central Station and UMC Utrecht until 17 June, after which it will travel to other cities and UMCs. It is an initiative of Alliantie Gezondheids op Maat, founded in 2018 by WOMEN Inc., COC Nederland and Rutgers.
“With the alliance we strive for equal opportunities for good health”, says Xanne Visser, expert on the theme of Health. “Everyone deserves appropriate care. Factors such as gender, sex and sexual orientation affect our mental and physical health. There is still a lot of misunderstanding and ignorance about this in healthcare. The consequence? Diagnoses are missed and treatments started (too) late. Or people avoid care, out of shame or because of previous unpleasant experiences.”
Inspire with personal stories
The exhibition shows the search of care recipients and care providers. In addition to Dhena, for example, Geert speaks, who for years did not know that he was intersex. Or Nanoah, who as a non-binary person of color feels misunderstood by healthcare providers. In addition, care providers explain how they deal with diversity in the consultation room.
Many stories can also be heard in the podcast Comes a man to the doctor. In recent years, according to Xanne, more attention has been paid to diversity in sex, gender and sexual orientations. With the exhibition, the alliance hopes to reach an even larger audience.
More knowledge among healthcare providers
“The white man is still the standard in healthcare,” says Xanne. “This means, for example, that heart attacks in women are diagnosed less quickly. We are committed to more scientific research into diseases in people that deviate from the prevailing norm.”
In addition, this (scientific) knowledge must reach the care providers. Xanne: “In recent years, medical courses have been paying more attention to diversity and inclusiveness in healthcare. That’s great. But we also insist on good in-service training for people who already work in healthcare. So that they can refer properly, for example.”
Taboo on menstruation
In addition to misunderstanding and ignorance, many care recipients encounter taboos in the exhibition. This means that they are less likely to seek help. For example, Dhena notices that menstruating is a taboo in part of the black community.
“In many African and Caribbean countries, a woman who bleeds is considered unclean. That image is also prevalent in my family. You are dirty, must stay away from men and must not scoop from the same pan. I always have to subtly ask my grandma, aunt, or niece to brag for me when I’m on my period. Talking about my complaints? That’s difficult.”
Am I assuming?
But Dhena also notices a taboo on periods among peers. Research by Plan International shows that 55 percent of boys think menstruation is dirty. “Women often don’t understand me either,” emphasizes Dhena. “Especially if they themselves have little pain during menstruation. This also makes me think: Am I pretending then? Is it between my ears?”
A few months ago she was in the hospital for an internal ultrasound. Everything was fine, she heard. Until later she went to her GP, who inquired about her diagnosis: PCOS. “Apparently that was in my medical report,” says Dhena. “But I didn’t know anything. I still have to go after it, but it’s quite demotivating when people are so light-hearted about something that affects my life enormously.”
Practical tips and tricks
The Alliance for Healthcare has put together a free toolkit especially for healthcare providers who want to be aware of sex and gender differences. “With information and handles to provide appropriate care,” explains Xanne. “Like important concepts and practical tips. For example, a rainbow sticker in your practice makes people feel welcome. But the toolkit also deals with questions such as: Which form of address do you use during an interview or on an intake form? And how do you keep asking questions in a targeted manner?”
“That is sometimes quite difficult,” admits Xanne. “Not everyone has the same need. And you only have limited time as a caregiver. But it helps if you show that you listen to someone and take them seriously. We all have prejudices, it’s about being aware of them. Try not to make assumptions based on stereotypes.”
Dhena has now pinned her hopes on acupuncture. “I recently told my acupuncturist about my complaints. She asked very specific questions about my blood loss and listened carefully. She didn’t have an immediate solution, but at least I felt heard. That was a relief.”
By: National Care Guide / Bente Schreurs
Image: Sabine van Nistelrooij