Content warning: infertility, medical issues
I wanted to share something today—something I’ve been processing for a while privately and now feel like I want to talk about with you all. When you read Rift, you’ll know the beginning of this particular story (from the last chapter of the book where I talk about choice and infertility), and this is a kind of ending for me. And I will tell you up front: I feel so relieved.
I want to talk about this because it’s what I’m going through, but also because I hope it encourages you to listen to your body when it is sending you signals about your health.
Last year I started to notice myself feeling very sick much of the time, and many of my symptoms seemed to revolve around my period. I would wake up every morning tired and fall asleep on my desk multiple times a day from fatigue. I was lightheaded. I was losing so much blood that it was difficult to leave the bathroom, much less the house. I was experiencing different kinds of pelvic and lower-back pain, and even taking walks became painful. The bloating has at times made me look very much pregnant, which feels odd for someone who has never been pregnant.
This kind of thing was easy for me to keep to myself as I work from home, but it was getting to the point where I was scared something was seriously wrong with me.
After months of doctors visits and scans and blood tests and distressing interactions with medical staff who didn’t take me seriously, I finally found a specialist who did. I think many women in the US can relate to having a difficult time getting quality care around reproductive health, so when I finally had a doctor look me in the eyes and tell me I wasn’t crazy, I felt so happy, even though I was getting a medical diagnosis.
Turns out, one in every ten women in the world has endometriosis, and I am one of them. I also have adenomyosis, which I can’t find a solid statistic on, but which some studies suggest impacts 20 percent of women. So it’s not uncommon, affecting many of those assigned female at birth. Even so, I had never heard of either of these conditions before.
Perhaps that’s not surprising, given my background and lack of sex education. But I’ve been out for eleven years and have had plenty of doctor visits since. So perhaps this is not completely due to my ignorance.
For instance, I have had chronic migraine since puberty. Doctors have told me the main issue is hypoglycemia, but now I have to wonder if I’ve just had symptoms of a more complicated disease for decades and didn’t know what was “normal.” I’ve always had heavy periods—I even laughed once when I heard the amount that the average woman bleeds on a period because that sounded like such an understatement. I should’ve thought a little harder about that at the time.
But I think a lot of women downplay their pain, minimize their symptoms, probably in part by how women have historically been unbelieved for their pain and experiences. And women’s healthcare has so often been understudied. Endometriosis is about as common as diabetes in women, but has a fraction of the research funding.
In case you’re wondering, endometriosis is when endometrial tissue grows where it’s not supposed to, like on the ovaries, bowels, and fallopian tubes. It is a whole-body disease that causes a lot of pain and inflammation. Adenomyosis is similar to endometriosis, in that it is endometrial tissue that grows into the uterine wall, or myometrium, causing an enlarged uterus and heavy bleeding.
The tricky thing with these diseases is they’re difficult to detect during ultrasounds and routine exams. And the only way to actually get the official diagnosis is through surgery. I wanted to share this information because so many still don’t know that they are experiencing abnormal symptoms and need medical attention. I didn’t.
Please watch the documentary Below the Belt: The Last Health Taboo—I felt so seen in this film about endo, and I think many others will as well. I also recommend the podcast The Retrievals, which I found a fascinating case study in how women’s pain is treated. I’m glad these issues are getting more awareness, and I hope we have more advancement on the way because too many people are suffering from these chronic illnesses and not getting any treatment at all.
Speaking of treatment, I’m going in for surgery next week! I’ve been waiting since August for the first available time for this “gold-standard” procedure, so I’m definitely ready at this point. We are doing a laparoscopic excision of any endometriosis the doctor finds, as well as a hysterectomy to completely eradicate the adenomyosis, which at this point I am ready to have, even though I understand it is a last-resort treatment. Read the last chapter of Rift and you’ll understand.
I’m hopeful for this surgery because I’ve heard how people who’ve had it feel like they have their life back again. I also feel grateful that I finally have access to this care. Yes, it took a lot of self-advocacy to find it, but I know that this is a privilege that should be accessible to everyone.
This experience has taught me so much about what it is to be embodied. I truly believe my symptoms were muffled for so long in part because I was dissociating for years as a coping mechanism. It does not surprise me that I only started paying attention to my body’s pain signals after years of trauma therapy, after reconnecting with myself.
I’ve been writing about this a lot on my own the past year, and will likely share more of my experiences in the future, but for now, I hope we can all remember that our bodies are good, our bodies our wise, our bodies communicate what they need.
I learned the opposite in Christian fundamentalism. I learned to repress my sense of self and my sexuality. I learned to dissociate from my body and live only in my mind. I learned to view my body as dangerous, wicked, and dirty. But now I know better.
Teach a girl to ignore her body and she probably won’t even notice when disease is ravaging her insides.
Maybe you’ve heard me talk about limitations lately. I’ve had to grapple with a lot of limitations this past year—pain and body changes and weight gain that are out of my immediate control. It’s been frustrating, but I think it is also teaching me a new level of love for myself. We promise our spouses to love them in sickness and health, and I think we owe at least that to our own selves. Showing compassion on my inflamed, tired, uncooperative body has been challenging for me, a perfectionist who struggles with not being able to do all the things, all the time. But I know now, the hard way, that rest and self-care are vital to existence. I’m hoping this next year is full of a loving rest, a patient recovery, and an opportunity to show up for myself and others in a new way.
When I started talking about this with my close family and friends, I realized that I’m not the only one who’s gone through all of this. And I know that sounds like a cliche, but it helps me to be reminded. I’m not the only one. Others have gone through this and come out the other side. I’ve done hard things before; I can do it again.
It hasn’t been exactly easy to keep up with my day job and my book promotion on top of a chronic illness, and I’ll be taking some time off my job to rest and recover. Hopefully I’ll still be around these parts, though, because writing makes me feel alive.
So, see you on the other side! Thank you for listening and being here.
Preorder RIFT: A Memoir of Breaking Away from Christian Patriarchy (available April 30, 2024) on Bookshop.org, Barnes and Noble, Eerdmans, and Amazon.