Black, Indigenous, and People of Colour lives (still) matter… even if your social media feed may not be showing black squares, George Floyd, Breanna Taylor, BIPOC artwork, or protests anymore.
This past June, in light of the Black Lives Matter movement, I sat in anger with what was happening around me and I began to write a blog post about systemic racism in Endometriosis healthcare and how it impacts pelvic care and treatment.
We are all aware of the difficulties non-womxn of colour face when trying to receive an Endometriosis diagnosis and treatment, now imagine adding another layer on top of that: racism.
I mentally could not wrap my head around having to fight even harder for my healthcare just because of the colour of my skin.
So, I stopped writing.
I did not want to take space up on the internet with my privilege and hollow words because I have never personally experienced racism in my healthcare. I didn’t feel right to talk about something I have zero experience in, so I reached out to Leah Haynes and Tami Ellis.
Leah and Tami are two Canadian, Black Endometriosis advocates, who are the founders of Endometriosis Events, a non-for-profit that focuses on fundraising and raising awareness + support for Endometriosis.
In 2019, I had the pleasure of meeting these resilient women through an Endometriosis in-person support group and I was honoured when they asked me to be a part of their first event, Endometriosis Brunch in November 2019.
Below are some photo’s and videos from the #EndoBrunch Event in Toronto:
Take a look below and read their thoughts on Racism and Endometriosis:
Systemic Racism in Endometriosis Healthcare
While Endometriosis has gained notoriety and recognition in the medical world recently, it hasn’t had as positive an impact on the lives of Black womxn. Many still struggle to get a diagnosis, treatment, surgery and at the bare minimum be heard.
We believe that Systemic Racism is a contributing factor to many of the disparities in health that Black people experience here in Canada. Unfortunately, the way Black womxn are treated when it comes to health and wellness is different than our non-Black counterparts. We are often made to feel that we have to be strong and therefore accept and put up with much more in terms of symptoms, discomfort and pain. This may cause our questions and inquiries to be pushed off by doctors.
Black womxn are more likely to have fibroids than other womxn, which can be a barrier to diagnosis and treatment as our chronic pelvic pain is often associated with other conditions. Black individuals, with Endometriosis, are often misdiagnosed, as is the case with most who have Endometriosis. However, because Black individuals may not be listened to and the medical literature is often based on the experiences of white women, Black individuals have a harder time being diagnosed correctly.
It is said that Black womxn are half as likely to get diagnosed with Endometriosis as compared to white womxn. It often takes longer for us to find out that we have this condition. This is unfortunate, given that it takes an average of 7-10 years to be diagnosed with Endometriosis. We also know that early detection is key and necessary to avoiding invasive surgeries. So this adds another obstacle and barrier to treatment.
Oftentimes, Black patients pain is dismissed and many have been told that they cannot be given pain killers or other medications in hospital emergency rooms because doctors and nurses think Black patients are making up our symptoms just to be given opioids and other pain-relieving drugs. We often have our symptoms dismissed and are made to feel as though we are faking it.
Leah says, “I had years of chronic pain, horrible menstrual cramps, nausea, and more awful symptoms. All were dismissed as nothing more than a bad period for which I needed to take an over-the-counter pain killer and “deal with”. It was a terrible feeling to be in such pain all the time and no matter how many visits to the doctor, have my pain ignored as though I was just making it up or could handle it. It took years and several doctors and specialists for me to finally get a proper diagnosis. I don’t know if my experience was racially motivated, but it is similar to what I have read about and heard from other Black women.
Couple this with the fact that I have uterine fibroids and the story gets even more and more difficult to understand. As soon as the fibroids were diagnosed, all symptoms were automatically attributed to the fibroids and could not possibly be related to anything else. Any health complaints and there was no worthwhile need to investigate things further; “it is your fibroids” was often the response.”
Tami adds, “For several years I was told that my constant cramps, nausea, and heavy periods were due to fibroids. Unfortunately every time I saw a doctor they would read my chart and never take into consideration my symptoms. When I was diagnosed with stage IV Endometriosis it was heartbreaking. I kept thinking that if only a doctor listened to me and looked beyond fibroids, my endometriosis wouldn’t be so severe.”
Race may impact a woman’s ability to access healthcare, medications, alternative therapies, surgery, and healthy food. Race and class are so tightly entwined and in some cases, women may not have the ability to find ways to eat a healthy antiinflammatory diet, which requires eating fresh food options. Many women may not have private insurance and extended benefits. These benefits are limited and not everyone can afford to pay out of pocket for therapies such as massage, acupuncture, naturopathy, pelvic physiotherapy, etc. This additional barrier may contribute to further challenges.
There are also very few Black womxn, in positions of power or fame, who have Endometriosis and talk about it. Tami states, “When I was diagnosed with Endometriosis I did a lot of research and read several stories about women’s experiences. Unfortunately I didn’t see anyone who looked like me sharing their story. This reminded me of when I was a little girl and not seeing myself represented in books, on television or even seeing a Barbie Doll that looked like me. It is really important that Black womxn are valued on all platforms.
My hope is that black womxn who visit our website, Endometriosis Events, can see that our experiences matter and realize the importance of using our voices.”
We need more individuals to speak of their experiences and name this condition, which affects so many of us. High profile advocates often bring much needed awareness to issues and can be a great ally in a fight for recognition and a cure.
I think Black patients need to reach out to other Black individuals with Endometriosis to find out if they can help them on their journey to living with this condition and identify the tools and resources that are available to them. Black womxn need to be connected with others who also have Endometriosis. These women can direct them accordingly to books, blogs, websites, materials, etc. where they can find help. Also, healthcare practitioners who will be able to assist them with navigating the system and seeking the proper channels for help and care.
We also need healthcare practitioners to recognize these biases and start learning about Endometriosis and race when they are still in medical school. These tools and practices can then be carried forward to their practices and help with the care of womxn with Endometriosis.
If there is someone out there who is going through the medical maze of trying to get a diagnosis or treatment for Endometriosis and/or pelvic pain, I would encourage them to advocate for their health. Attend appointments with notes about what you are interested in talking about and what questions you would like to have answered; ask around and seek out a doctor and/or specialist who listens and will act on your behalf; keep a journal of your experiences, appointments and encounters with all nurses, doctors, etc.; do not be afraid to ask questions; continue to advocate for your health and don’t give up!
Tami Ellis was diagnosed with stage IV Endometriosis in 2017. Since her laparoscopy and removal of her appendix and both Fallopian tubes, she has been raising awareness and inspiring women. Tami’s passion has led her to volunteer at support groups and also host a fundraiser with Leah Haynes. She continues to share her journey and create a platform for women to talk openly about their experiences.
Leah Haynes is an Endometriosis advocate. Having been diagnosed with stage IV Endometriosis after years of debilitating pain, she now dedicates her time to raising awareness through co-hosting fundraising events and facilitating a support group for women with suspected or diagnosed Endometriosis. She and Tami Ellis have formed Endometriosis Events, which they hope will be another forum by which they can work to raise awareness, campaign for change and hopefully one day find a cure for Endometriosis.
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