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When Don't Get Pregnant Becomes Can't Get Pregnant by Allyson Henderson

Updated: Sep 28

Photo by Charles Deluvio

Infertility is a disease that 1 in 8 suffers from. THAT’S A WHOLE LOT OF PEOPLE. Whether you know this or not, someone you know is struggling with an infertility diagnosis. Too often it’s a silent suffering that no one notices or talks about. And so many Black women don’t know how prevalent it is for us because we aren’t usually a part of the national conversations. Black women aren’t seen in the marketing pamphlets or highlighted in the news stories – so naturally we think that it doesn’t really apply to us. That being said, not many black families know to talk about fertility health with their daughters. But like many other health concerns, we are disproportionately affected.

I didn’t always know that I wanted to be a mother. It was a feeling that would come and go in my twenties but by the time I reached thirty-two, it was a dream that I couldn’t free myself from. I started to feel like I was running out of time. My career wasn’t right and my life, in general, wasn’t going in the direction that I had anticipated. But listening to friends and family, I still felt I was young enough to make all of my dreams come true and that when I was truly ready, my time for living the glamorous life with a baby in tow would come.

I was so broken finding out my diagnosis. I was so confused at why something that I questioned even being a part of my life for so long made me feel ashamed. I felt like a failure. You go your whole life trying not to get pregnant and then you find out that you are unable to conceive – naturally or with fertility help.

Having to experience the heartache that your body has trouble doing or just cannot do what is supposed to be natural is high on the list for the most devastating and vulnerable places for a woman to be. It's gut-wrenching to say the least. I was left feeling like a broken, defective model of a woman and I didn’t understand why me. Did God not believe that I would be a good mother? Does God not see the love that I have on the inside of me waiting to give to a child? Why me?

I was diagnosed with multiple culprits (endometriosis, PCOS, and ovarian cysts) that caused and worsened my infertility; not to mention the erroneous and compassion-deprived advice from several doctors over the years which led to further complications. It was their bad advice that nurtured the notion in a very personal way that the healthcare system, as it relates to Black women, can’t be trusted.

One of my biggest culprits were fibroids. Fibroids are noncancerous tumors that develop primarily within the muscle tissue of the uterus. In comparison to white women, Black women are two to three times more likely to suffer from fibroids. Black women have more symptoms, develop them earlier in life, and have bigger fibroids than our white counterparts; and there isn’t enough information that provides a definite reason why we suffer the most and the worst. I don’t know if they don’t care to find out the answers or if the research truly produces inconclusive results. Nonetheless, here we are.

From the start of my period in the sixth grade, I have dealt with bad cramps. My cycle has always been debilitating. It has kept me from school, from work and I have even turned down some pretty cool opportunities out of fear that I would experience a bad month. As I grew older, I was diagnosed with a retroverted uterus and ovarian cysts. I was told that the uterus was what it was and the cysts could be removed. So, at the age of twenty, I had the cysts removed. Looking back I find it astonishing that no one thought to educate me on the possible return of the cysts, family planning or on my fertility health in general, especially as it related to the positioning of my uterus. As time went on and the years passed by, my cycle got worse -as if that was possible. By the time I reached my early thirties, I was bleeding profusely; and by my mid-thirties, I was bleeding so severely that I wore overnight menstrual pads every day, slept on towels in order to not ruin bed sheets, shied away from intimacy because I was embarrassed and never went anywhere without an extra bag full of pads, panties and extra pants. The clotting, the heavy non-stop bleeding, the pain. I wouldn’t wish any of it on my worst enemy. If there is such a thing as PTSD from dealing with all of this, I for sure needed to be diagnosed. Once I crossed over my mid-thirties, my life was in danger. I was anemic and clotting through pads and clothes every day for over a year to the point that a nurse practitioner at my primary doctor’s office would call not just to check up on me weekly, but to make sure I hadn’t bled out somewhere.

I tried my hand at going vegan (which at first was in support of a friend who wanted to lose weight). I was very intentional about what went into my body because I believed that I could be cured naturally. Though this route may work for many, my experience was different. Work was more demanding and the several years of being ignored, misdiagnosed, enduring different procedures and failed hormonal therapies to reduce pain, regulate bleeding, raise my hemoglobin levels and preserve my uterus, my infertility and its root causes were not cured. They got worse. I often sit and think that if life wasn’t so chaotic for me at that time, maybe my experience would’ve been different. More positive. My friendships were in danger, my job was in danger – MY LIFE WAS IN DANGER so much that I made the decision, that I still battle with today, and that was to surgically remove part of my problem by having a partial hysterectomy.

Dealing with an infertility diagnosis and then making the decision to remove what a lot of people associate with womanhood is heavy. HEAVY! The best description that I can give you is that it is like struggling with the five stages of grief. You deny, you bargain with God, you get angry, you cry and you accept. Then repeat. It doesn’t go away. My diagnosis has pushed me to seek support, not just from a therapist but from others who share similar stories. I have discovered that I am not alone. I work hard to encourage and remind myself daily that I am no less a woman because I have to take a different path to have the baby that I desire. It has also pushed me to connect more with God, my mom, and to rethink my connections with friends and family members.

I know you’re probably like, “How on earth does it make you rethink relationships with friends and family?” Well, it became very clear, very quickly that most meant well but were uneducated regarding fertility so much that they couldn’t fathom what I was experiencing or my journey ahead. This resulted in me enduring some pretty tone-deaf moments. I brushed off and skirted through so many conversations simply because more often than not they left me feeling worse.

So, in the spirit of self-preservation, I became distant and silent. I had adopted it as my coping mechanism. But that wasn’t and isn’t the answer – awareness and education are. No one can advocate for you better than you. I had to learn how to be a better advocate for myself and ultimately for other women like me.

With the backdrop of respect and education, allow me to offer some advice on how you can show up in a positive way for those you know suffering from infertility.

Endless apologies and suggestions are nice but stop. We don’t want you to try to solve this problem for us unless you’re offering to be a surrogate or egg donor. We just want to feel like our feelings of depression, anxiety, jealousy, or hopelessness are valid.

Just listen. Sometimes saying nothing at all and being transparent in that you have no idea what to say is all that we need.

Please, no clichés or pleasantries. When anyone expresses to you that they are infertile or that they struggle with infertility, please save the temptation to say things like, “Don’t worry” or “It will all work out” or “Kids are expensive” or “I wish I had your life”  or “It will happen when it’s time.”  We get it, you want to be comforting. Thank you, but unfortunately, your comments minimize our situations and diminish our fears, anxiety, and depression.

Become an advocate. Help rally employers and elected officials regarding reproductive rights, fertility, and reproductive healthcare. Help inform employers why they should purchase insurance premiums to allow for infertility coverage AND why insurance companies should include it in standard packages.

Be proactive about your fertility health. It shows that you listened and that you understand why reproductive health and fertility health are important even if having children right now isn’t a priority for you. So, on your next visit to your gynecologist, ask for a Fertility Diagnostic Test. Let them know that you want to learn more about your ovarian reserve. Ask about your AMH (Anti Mullerian Hormones) and your FSH (Follicle Stimulating Hormones). These tests will give you an estimate of follicles inside of your ovaries and a possible egg count. That information will provide you a foundation for future decisions.

How each person copes with infertility is different. But one thing is for sure we have to advocate for ourselves and for each other, whether infertility impacts us directly or indirectly. If you don’t know much about the topic, say so. That will be received. Once more informed - be a public conversation-starter. Doing so can dramatically improve pregnancy outcomes for Black women. This topic only gets easier when we stop hemming and hawing around it and come to terms that not all of us will have a future that includes biological children.

As for me, I am still making peace with a life that will not include me giving birth and I wouldn’t be able to be where I am if it wasn’t for those around me trying really hard to understand. Not engaging with friends and loved ones only makes things worse. How could I expect them to help me if I couldn’t tell them what was really happening to my body and my emotions? By talking to friends and family and educating them, I not only got their support but it gave me a safe place to vent, cry, scream, or distract me from negative feelings. I find that the more we communicate and the more that we are honest about what’s happening, the better we will start feeling. Oftentimes when we are dealing with infertility, we don’t know ourselves how to communicate information. Give yourself the opportunity to bring people into your journey and hopefully, you will find the healing you need.

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