Today’s post in our ongoing series on Sexuality & The Church comes to us from R.A. Sovilla. R.A. lives, loves, and writes in Southern California. She is currently experiencing a surgery-based remission from endometriosis pain and is helping launch a nonprofit organization to help women find and finance treatment for chronic pelvic pain. She blogs about the nonprofit’s progress at http://endononprofit.blogspot.com/.
“But you don’t look sick.”
This is a common reaction when I first tell people about my endometriosis, a disease that causes debilitating pelvic pain. Some say it patronizingly, reminding me of doctors who’ve suggested all I need is a Percocet, while others say it with a challenge, as if I ought to whip out my diseased entrails to prove I’m unwell. I get tired of defending my illness. It’s like I get to play the defense attorney for a thief who’s stolen my most precious possession. In fact, for twelve years I kept silent about the pain because the “you don’t look sick” response confirms a deep fear that I won’t be believed and the burden of proof will be on me.
Frankly, that’s how it is when you have a “woman’s” illness. (Just look up the origins of the word hysteria.) Though there are an estimated 1 in 8 women with endo, too many gynecologists don’t believe endometriosis is serious, and some don’t even believe it’s a real disease (even though if you cut me open you can see it growing on internal organs!). Nearly all the women I’ve met who share this disease have been told by a doctor in some form or another that the pain is all in their head, so most women with endo don’t get diagnosed for about a decade. That’s a decade of crippling pain. A decade of not being believed. A decade of being told suck it up, stop being dramatic, don’t be such an attention whore.
As you can imagine, endless despair can be heaped upon women like me. Despair because endometriosis causes the same amount of pain as cancer, but rarely goes into remission and almost never brings the relief of death. Despair over pain medication that doesn’t work and multiple surgeries that also didn’t work. Despair over infertility. Despair because endometriosis has no definable cause, no cure, and continues to progress throughout a woman’s lifetime.
Then the Christians offer prayer. God wants to bring you miraculous healing. I’ve been prayed over by Presbyterians, Baptists, and Pentecostals, by friends and pastors. The worst part is when immediately after praying I’m asked, “How do you feel now?”
Nothing changes, I am not healed, so the insinuations begin that maybe I didn’t have enough faith. Or worse still, the suggestion that I must have some huge sexual sin in my life because I have a pelvic pain disorder. Something tells me that God wasn’t punishing my homeschooled, virginal, 17-year-old self back when my symptoms first began, and suggesting so only encourages a girl to feel guilty for natural sexual attraction.
Then the pastor plays the sex card. Wives should be sexually available to their husbands. Period. I cringe every time I hear this type of teaching because it keeps women objectified in the exact same way pornography does by putting our weight and worth in our ability to give men an orgasm. It ignores relationship, strips us of our personhood, and takes love out of the picture. (You know, that love that Jesus talks about in Matthew 22. Or Paul in Corinthians 13.) This message is damaging to the healthiest of women, but for women like me who sometimes physically can’t even have sex because of pain, it just adds to an already growing mountain of guilt and shame. We aren’t given space to mourn the loss of our own ability to enjoy sex because we’re so busy feeling guilty over not being able to please our men.
These messages pile up to create the Big Message: God doesn’t love you. You might be able to convince Him to love you, if you have enough faith and if you never have any sexual feelings and also (contrarily) if you play the sex-kitten for your spouse like a good little woman should. But maybe not even then because, well, you are a woman. You have a woman’s disease for a reason. Eve sinned first, after all.
As the Church, we need to find a better way. A better way to talk about sex. A better way to talk about disease. Let’s remember that women, too, are imago dei. Would you reduce Jesus to a sex object? Do you think of God in terms of how well He can perform for you? So why would you preach the same about women?
Let’s remember that disease is a part of our broken world. Sometimes a girl didn’t do anything to bring harm, disease, or tragedy upon herself. Sometimes life just happens. Disease just happens. Throwing false guilt on a girl by suggesting it is her fault she got sick makes us no better than the Pharisees asking Jesus who sinned and caused a man to be born blind. His response? No one.
I’m single and don’t live with the consequences of endometriosis in my sex life yet, so I interviewed my friends Dan and Kandyse who have been married and living with endo for eight years. Since their wedding, Kandyse has had five surgeries, including a hysterectomy, and she has tried just about every pain medication possible. She’s 28 years old.
R.A.: Kandyse, you had endometriosis before you got married. Did you know that sex would be difficult?
Kandyse: No, I didn’t think that it would be painful. Once we got married and we did have sex – (it was the first time for both of us) – that’s when the pain came…not just when we would have sex, but persistently. A lot of times, the pain brings about vaginismus, and vulvar vestibulitis, which adds to it. Then you have the emotional side. All these things add up and then you’re supposed to just have sex whenever your husband wants it? Not gonna happen.
R.A.: When it comes to your sex life, have you felt loss in not being able to enjoy sex yourself or is more feeling bad about Dan?
Kandyse: To not be able to do it how we want and when we want makes me feel guilty. It makes me feel like I’m broken. That goes back to being able to have kids. The one thing that everybody is “supposed” to do you can’t do, so you feel broken and that makes you feel horrible. I feel bad for Dan more than myself. Those few times that we can do it, there is pain, but as long as it’s minimal I can usually push through. But you have to be careful. You can’t move this way; you can’t move that way; you have to go slow. You can’t just get caught up in the moment, and you can’t try it different ways, cause it all hurts.
Dan: We’ve heard stories where the wives are just so upset and feel so bad [about not being able to have sex], and then their husbands put them down and yell at them too, and I go, “Why, why would you do that?” It’s no one’s fault, especially not hers…If she’s in pain, I just say “Okay, we’ll try another time.”
R.A.: My feeling as a woman has often been that we’re objectified and reduced to how we can perform sexually. Obviously you don’t view Kandyse that way. Can you talk a little bit about how you do view her?
Dan : I view Kandyse as my wife, as my best friend, as my partner, as a person I will grow old with…I do not view her as a sex object, because that is not what the marriage is about. It is about being in love, and spending the rest of our lives with each other because we just have this connection where it doesn’t matter what people say. I think she feels that when she has to stop [during intimacy] she feels it’s a real letdown to herself and she feels she’s letting me down as well. But I should never feel like that. If she’s in pain, I’m in pain. At no point have I ever been upset about it, yelled at her, been disappointed in her, because that’s not what it’s about. It’s about being together with someone I truly love.
…The worst part is the visual aspect of what endometriosis does. To see my wife crawling on the ground from the bed to the toilet just to go to the bathroom, or to get a change of clothes, that really hits home. People...think “Eh, it’s pain, you deal with it, you get over it” but sometimes it’s so severe it actually puts a person on the ground, crawling, writhing, curled up in a ball. To see it in it’s worst stages is really disturbing.
Kandyse: To have diarrhea and throwing up and passing out because of the pain - that’s crazy! To not be able to stand up and walk three, four, five steps from the bedroom to the bathroom...when oxycontin, roxycontin, oxycodone, Duladid, morphine - when that doesn’t help with the pain, it’s serious pain.
R.A.: Can you tell us a little about what it's like to struggle with infertility?
Kandyse: We got married and knew we wanted to have kids almost right away. We waited a couple months, and then were like, “Okay, let’s try it.” I come from a really fertile family where everybody has kids. It didn’t happen for us right away, and we thought “It’s not meant to be; it’ll happen when it happens.” Then six months. Then a year. We knew something must be wrong. All this time, my pain is getting worse and worse - E.R. trips and stuff like that. Then you get the questions from friends and family - “When are you having kids? When are you having kids?” - and it makes you feel like such a loser. I’m still not over the fact that we can't have kids
R.A.: How do you feel about Dan’s response to everything? Do you feel this has brought you closer together?
Kandyse: Absolutely, it’s brought us closer together. Between not being able to have kids and all the surgeries, he could have left at any point thinking I’m not worth it. But he doesn’t feel that way. We’ve talked about that. It’s just a horrible disease and it does stuff to you. Last night I was trying on bathing suits and started crying cause I hate how I look because of all the surgeries I’ve been through. It impacts every aspect of your life. Dan’s response makes me feel better and it makes me feel lucky cause a lot of guys aren’t like him.
More than five million women in the United States have endometriosis. You can learn more about endometriosis from The Endometriosis Association, from Women'sHealth.gov, Endometriosis.org, and from R.A.'s Web site. Many thanks to her and to Dan and Kandyse for sharing their stories with us.