“I suffer out loud so that other women know their pain and symptoms do not have to be hidden but can be talked about in open conversation.”
What are you raising awareness for in this campaign?
I want to encourage women of color to seek menstrual health, to feel heard in their challenges and acknowledge their pain. I am also advocating for Endometriosis, something that 1 in 10 women have and yet so few are diagnosed or even know about it.
For those who don’t know, can you explain what Endometriosis is?
Endometriosis is an estrogen-dependent inflammatory disease characterized by the presence of endometrial glands and stroma outside the uterine cavity. Recent studies point to it being (or linked to) an autoimmune disease, causing full bodily problems even outside your menstruation window.
What has inspired you to become passionate about raising awareness on these topics?
I try to go for my annual check up with the gynecologists, get my pap smear and do overall check-in. This is always self initiated, my doctor never requests it from me. I have found over and over again that (especially in the Netherlands!) doctors do not take the initiative to test or check in with patients before there is an overwhelming urgency, symptoms or accident. Personally as a Woman of color I have faced my share of discrimination from medical professionals.
I spoke to the Woman of color in my life and they have, expectedly so, reported the same. So many have never even been to the gynecologist out of fear. Fear of the procedure, fear of being treated with less compassion because of their skin color, fear of the doctors gaslighting their symptoms and fear of results that they will not be given more information or treatment for. As a result, I now know more than a handful of women who show symptoms of varying menstrual health related illnesses and yet choose to suffer in silence at home. I do not want women of color to be afraid to seek health care. I want to support them and empower them to continue to push until they get the attention they deserve.
What was the moment when you realized change needed to happen?
I was diagnosed with Endometriosis almost two years ago and the journey to that diagnosis was absolutely awful. I was faced with constant gaslighting and discriminatory comments from my doctor – who believed it was more likely that I was suffering from an unidentified STD due to my demographic. Had I not trusted my gut and knowledge to keep pushing my doctor, I would have given up and returned home to suffer in silence, as so many women of color do.
My pain is excruciating but knowing why has helped me to educate myself; find out how to make things better and how to adjust my lifestyle to accommodate for it. I also no longer suffer in silence, I suffer out loud so that other women know their pain and symptoms do not have to be hidden but can be talked about in open conversation.
What do you think is the biggest challenge for women of color right now regarding (menstrual) health and care?
Firstly fear, We need to support and empower women of color to go and seek health care, report their symptoms and get check ups.
Secondly, bias in medicine. A lot of medically recognized signs and symptoms are recorded from patients who are white or fair skinned, their presentation of darker skin tones is unknown or mis-identified. So women may show symptoms, but traditional medicine is just not able to recognize these. And lastly misinformation and cultural taboos. In many of our cultures women of color are discouraged from speaking out in regards to their menstrual health or sex or their bodies. Often times when a problem is voiced they are told it is ‘normal’ or that it will pass once they have had children. This leaves women of color afraid and uneducated about illnesses and diseases that in many cases have no relation to their sex life or status.
What do you think is the biggest misconception about menstrual health?
‘It is normal to be in pain’. In all other fields of medicine pain is a bad sign, it is a sign that something is wrong. So why should that be any different in regards to women’s health / menstrual health?
What do you hope to achieve by speaking up?
I will be launching my own platform for advocacy and education: @just_crampy with that I hope to support and empower women of color to go seek medical attention, see a gynecologist and report their pain, symptoms or any other problems.
The long term plan is eduction. There is so much that all women need to learn about our bodies, the way we react to food, work/life balance and how we can make small changes to improve our quality of life. My main focus will begin with Endometriosis as it something I can talk about personally and share my progress but eventually I hope to branch out in collaboration with other women to share those experiences.
What’s an important lesson you’ve learned on your journey so far?
Trust you gut. If you feel that something is wrong, odds are it is. Go get it checked out and (my second lesson) be resilient, keep going until you get the answers you’re looking for.
What advice would you give anyone reading this who relates to your story.
Find someone who you can talk to who does not gaslight your feelings. When doctors will not listen it’s important to find a group of people who believe you and who can support you through this journey. You will need help! In the cases that you cannot find help within your surroundings, look for it online and learn how to help yourself too. I would also suggest (this is for all women!) to track your symptoms so that you become familiar with your own body, so when anything changes you are aware.
What do you want to say to anyone who wants to contribute to improving health and menstrual care for women of color?
If you are a doctor… just listen to your patient please! And its always better to be safe than sorry.
For those who are support groups or partners (regardless of gender!), I encourage you to listen and offer your support, the help needed will differ per person. Allow us to speak our truth and feel heard in our pain.
For people in positions of power, for example employers, I was very lucky that my previous employer was very open and supportive, he encouraged me to slow down – take time of and focus on my health when needed. I cannot be a good employee if I am struggling. Make space for us, and give us the time to focus on our health – I promise you the work will get done!
Can you recommend something that people can do become more knowledgable and to support your mission
Read Period Power by Maisie Hill.
Follow accounts* such as @endowhat / @endometriosissummit / @theendo.co for info about Endometriosis and @getsomedays / @sexwithemily / @berrionlberry for info about periods.
Follow my new platform/project: @just_crampy Please view all these accounts at your own pace, the images and information can be overwhelming.
For support, If you know a woman who is afraid to go to the check-up, perhaps going with her could make things easier. And be open to dialogue about menstrual health.
Why do you think it’s important that people like you are heard and amplified?
The bottom line is that health is everything. It is no secret that women+ statistically get worse medical attention and our pain is often dismissed. I think it’s less about ‘people like me’, but more about women+ in general, we deserve adequate health care and to be educated about our bodies.
Want to connect with Alizée Bollen? Reach out via @just_crampy on Instagram.