Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

Why Supporting Gender Affirming Care in the Church is Important

A bot asked me on Twitter if I support gender affirming care for minorsno doubt to stir the pot with the people who were already in my comments. Thing is, I don't need help to stir the pot. So lets talk about it.

Under the umbrella of gender affirming care are all kinds of treatments for both queer folks and non-queer folks of every age. Let's talk about some of the ones I use and receive.

I have a chronic illness called PCOS that affects the natural balance of male/female hormones in my body. I am a cisgender woman with male hormones in my body that I don't want. I take medication to remove those excess androgens from my body. That is gender affirming care. I receive it to make the hormonal composition of my body match my gender. Without that medication, I would have male pattern baldness, I would grow a beard, and that testosterone would create chaos inside of my body.
My condition is genetic. My paternal grandmother and her mother both had some version of it. My great grandmother had a lot of the same unwanted hair growth. My grandmother struggled with her fertility ended up having a hysterectomy before she could finish having children.
I was born with this condition. I had it as a teenager. I didn't get any kind of healthcare for my condition as a teenager. I needed gender affirming care that I didn't get because my mother didn't think it was important. I live with the consequences of those decisions every day of my life.  
There is no cure for my condition. I will be managing this circus, which was allowed to progress unchecked for decades because of conservative attitudes towards women's healthcare, for the rest of my life. I am sick all the time and I'm never going to get better.
Between my Catholic mother, BYU, and my mission, I didn't get any real treatment for my condition (because the first step is usually using birth control as hormone therapy) until I was in my early twenties and already married. That allowed my disease to progress to a point where I will never have children without spending $20-30k on fertility treatments.
This is what denying me gender affirming care has done to my life. 

So do I support withholding gender affirming care from underage people? 
 No. Not at all. I had that decision made for me in the best interest of others and their agendas, not what was best for me, and I will be dealing with those consequences for the rest of my life. Children and young adults deserve to receive the healthcare they need, not the healthcare that strangers in churches think they should be receiving. Especially when folks in those churches don't know the first thing about the people they're restricting treatment from.
Russell M. Nelson is a doctor. Nevertheless, he is not MY doctor. He is a surgeon, not an endocrinologist. He doesn't know the first thing about my health, my needs, or the treatments for my conditions. No one in a medical setting would let him anywhere near my case because he's unqualified to practice this type of medicine. So why should I, or anyone else, be comfortable with him or anyone else in the Church, being allowed to interfere in these decisions for church members through policy changes and church discipline?
Nothing about an ecclesiastical office qualifies someone to make my medical decisions for me. Conservative folks with a Twitter account, a cable package that includes Fox News, and the email addresses of politicians aren't qualified to treat my medical issues. 
The same way that preventable suffering during miscarriages and pregnancy losses are the consequences we're now living with because of anti-abortion legislation, the same thing will happen with bans against gender affirming care. The collateral damage goes far beyond underage transgender people. Conservative folks are so determined to punish transgender kids and their parents for being different, they're willing to destroy the lives of anyone and everyone else as collateral damage along the way.
Why? Because punishing trans people never was ultimately what this was about.
Remember: all culture wars, moral panics, and identity politics are the cheap Party City disguises for class warfare. When rich people in power can keep our lives in shambles, we're easier to control. They want you to hate me so we won't ever organize against them.

Setting Boundaries in a New Ward

Now that we're in a new ward, I've been practicing and rehearsing all the weird boundary conversations I get to have with the folks around me.

"It's not that I'm unwilling to serve in a calling. It's that if you're asking for anything that takes more than an hour on a Sunday to do, the answer is No. I don't have the time or energy for that."

"For the sake of clarity from the outset. I don't have kids. Yes, it's because I can't have them. Yes, it does mean I don't particularly enjoy being around your children. Do not ask me for free babysitting or callings in Primary."

"Do not ask my husband about my infertility (or anything else about me) behind my back. He will tell me. It will upset me. Talk to ME about me, please. Thank you."

"I am perfectly willing to say 'No' to you if you ask me for something I don't want to do. This is not an invitation to convince me. It means my decision has been made."

"If you ask me what I think about something, you're going to get an honest answer from me. That's the way God made me. Deal with it."

"If you want a good relationship with me, don't assume that because I've served a mission and been a temple worker that I am an endless reservoir of time and talent for you to pull from. That is not my life anymore."

Having Healthier Conversations about Fertility in the Church

If you're Mormon or Mormon adjacent, never underestimate how important it is to have healthy conversations about fertility with your kids.

I've known since I was a teenager that I would have fertility issues. My PCOS was still undiagnosed at that time, but the symptoms were already affecting my health. I suspected something might be up. Then it came up one day as I was studying my patriarchal blessing. As a result, I've known from the time I was 16 years old that I would have fertility issues.

I went through my Young Women lessons and my BYU dating experience already knowing this about myself. I dreaded the thought of getting married because I knew anyone who married me would probably miss out on parenthood. Thinking back over that point in my life, there was one person who had an open conversation with me about infertility that prepared me to be an infertile woman in the Church.

It wasn't a general authority, a bishop, a doctor, or a parent.

It was a girl from my freshman ward.

Her sister was already married and also in a student ward. She told me how her sister hadn't been able to get pregnant while she watched everyone else around her have babies. "She goes to church and listens to people go on and on in testimony meeting about how grateful they are that Heavenly Father trusts them with his children," she was explaining to me. "And she just sits there in silence thinking 'What's wrong with me? When is God going to trust me enough to parent?'"

Those words didn't fix my problem. But they prepared me to live in a community that has no healthy, compassionate discourse surrounding infertility and reproductive health. It prepared me to be bullied and misunderstood by the people in my own church.

Fast forward several years. I'm in my bishop's office. I asked him for a blessing because leaving my PCOS untreated for the sake of trying to conceive was unbearable. I'd spent my whole life being sick, and I wanted to know what it felt like to get better. To be normal. I wasn't willing to live on frustrated hopes anymore for something that wasn't going to happen. God was either going to cure my PCOS and allow me to conceive, or I was done giving any more of myself to the prospect of having kids.

Did I give God an ultimatum?

Yes, I did.

That blessing was the day I demanded a response from God because I needed one. And I got one. It was the same answer he'd been giving to me since I was 16 years old. Nothing had changed.

So, I let go of any hope or expectation that I would ever have kids. I stopped living my life in constant anguish over what I didn't and couldn't have. I started rebuilding and redefining happiness out of different materials than everyone else.

And you know what? There has never been a shortage of people in the Church who have found all kinds of reasons and occasions to tell me my life is wrong. That I'm doing happiness wrong. That my life should look more like theirs, that I should explain to them why it's different.

I tried so hard for so long to find happiness in the Church as a childless person. As a woman whose worth comes myself rather than external circumstances and conformity to everyone else's expectations. I tried until I had nothing left to give.

Being at Church felt like being held underwater. The environment wasn't made for me. To be in it, I had to hold my breath and find snatches of oxygen wherever I could. Take a gulp of air, serve in Primary. Take a gulp of air, sub in Nursery. Take a gulp of air, teach Young Women. A babysitter. That's what I felt like. A babysitter for other people's kids. Those were the jobs I was given to do because that's how the Church sees me as a women. Good to be a babysitter and not much else.

Part of why I served in the temple as an ordinance worker was because it was one of the few spaces in the Church where I wouldn't have to see any children. Even then, the workers and patrons were constantly asking me "Why are you a temple worker?" (i.e. Where are your kids?)

"How often could you have possibly been asked that question? Surely you're exaggerating."

My record was three times in one shift. I got good at pretending it didn't hurt, but that day I went home early and cried.

The idea of a compassionate, empathetic God is comforting. It does not, however, make it easier to live and worship among people who are, as a collective, very bad at this. You reach a point where you get tired of shedding tears because the people around you keep hurting you.

So, do we need Young Men and Young Women lessons on infertility and reproductive health? Yes. Because without them, they will grow into one of two kinds of adults:

  • The adults who hurt people because they don't know any better.
  • The adults who get kicked in the teeth when infertility happens to them.

If you never talk to your kids about the fact that infertility is normal and something that can happen to them, even when they "do everything right," you will send them into the experience thinking they did something wrong and it's their fault.
Infertility is not a personal failure. It's not a punishment. It's not a curse. It's not a reason for people to babysit your kids, or to have more responsibilities at church. It's not your narrative. You don't get to assign meaning and value to it.

For me in my life, I decided that infertility was a blessing. A gift. The road less traveled. The opportunity to lay aside everything old and ill-fitting from the way I saw God and the world around me. Infertility has given me freedom and independence from the constraints I would have as a parent. My time belongs to me, and I get the rare gift of deciding for myself how I want to spend it.

If someone, just one person, had been able to talk about infertility as an opportunity instead of a tragedy, the last ten years of my life could've been so different. 

Infertile people deserve that in all their interactions, but especially at church.

The People You Meet in Infertility

Let's take it from the top and have a conversation about Hannah, and all the people around her who aren't making her life any easier.

Person 1: Peninnah, the sister wife

This heifer taunts and makes snide comments to Hannah about not being able to get pregnant. For years, she does this incessantly until it gives Hannah anxiety and makes her openly cry in public. Now, this is just about the most extreme, hurtful example there is. But encapsulated in Peninnah is a lot of hurtful behavior that many with infertility do experience.

Relatives that make your infertility about them and their feelings? People with better luck passing judgment, asking impertinent questions, or making stupid comments that show how little they understand about what you're going through? Hannah's got that in spades.

Person 2: Elkanah, the husband

"Why weepest thou? and why eatest thou not? and why is thy heart grieved? am not I better to thee than ten sons?"

This line makes me laugh every time I read it. He's trying so hard, and he has no idea what to do. Infertility is something couples experience together, while experiencing differently. It's not up to one partner to save, fulfill, or change the way the other partner feels. And because he has children with another wife, he isn't even fully experiencing Hannah's infertility the way she is.

Elkanah. You can't fix everything with the magical gift of your presence. You're not chocolate.

Person 3: Eli, the priest

I'm sorry if this is news to anyone. But walking up to a woman he doesn't know, interrupting her when she's praying, and telling her to go home because she's drunk is not at all helpful. And in that spirit, let's talk about strangers giving unhelpful advice and feedback on reproductive health. Because that has not changed at all.

If you've ever started any sentence to an infertile person with "why don't you just" or "have you tried," you weren't really doing that person any favors. They had to educate you, against their will, about why your behavior was not okay. Anyone who has been experiencing infertility for longer than five minutes will have already explored any option the average person can think of off the top of their head. Trust me on that one. They don't want or need uninvited input from a random stranger who is not a doctor, no matter who that stranger is.

And of course, because Eli is actually the priest, he gets all the credit for "fixing" Hannah with his super special priesthood. I'll pose you a question. Does he though? Point to me in 1 Samuel 1 where Hannah is cured of her infertility because of Eli and the absolute bare minimum he does, after he extracts his foot from his mouth? I'll wait.

Hannah, in my estimation, did everything that was required of her when she prayed to the Lord from the depths of her soul. He doesn't deserve credit for what she did, just because he holds the priesthood. Especially since he's not even good at it. See literally every other chapter he's in.

Person 4: Herself

The most powerful verse in this entire story is when she finishes her prayer, dusts herself off, ignores these wearisome people, gets something to eat, "and her countenance was no more sad." 

She left that moment having absolutely no idea if, when, or how her prayer was going to be answered. She wasn't sad anymore because she decided she deserved to go on living, even if it never was. She accepted that she might never have children. I know that because that was the exact moment I stopped being sad about my own situation, which I did after I read this story for the first time and truly understood it.
Now you may be thinking, why would God do this to her? Shutting up her womb like that. Why wouldn't he do it to the heifer to teach her some humility? Why do it to this very awesome lady?

My awesomeness is debatable, but let me hazard an answer to that one.

Infertility is not the end of the world. It feels like that at times. But that's because of how much of our personal worth and self-perception are wrapped up in eventually being able to have and raise kids. I am not sorry that I experience infertility anymore. I've been going through it long enough that I'm grateful for it. I'm glad this is how my life turned out. I don't live in a constant state of wishing for this part of it to be different anymore.

I've lived with infertility long enough to see how liberating it can be. I've gotten the chance to know and love myself in a way I couldn't if my entire being was wrapped up in taking care of tiny humans and giving them the things they need. That's why one of the things that still bothers me is when people say "you'll never know love until you have kids." But parents don't get the monopoly on true love. It may be true for them to say that those without children can't understand the love they have for their kids. However, it would be equally valid for me to say that they don't know the love infertile people have and develop for themselves because it's something they don't get to experience. There are many kinds of love in this world, and none of them are more valid or valuable than any other.

The fact is, "shutting up my womb" was the best, most loving thing God has ever done for me. It's what I needed and he understood that. Sometimes I feel like he's the only one who does. It's not a mistake. It's not his plan gone awry. It is his plan for my life. It's what the plan of happiness looks like for me.

I'm glad Hannah's story is in the scriptures. I don't know where I'd be without it.

What would I do if my husband couldn't be happy without having children?

Something is currently knocking around in my head that I realize I should probably shake loose.

Someone recently asked me what I, an infertile woman, would do if my husband couldn't be happy without having children.

My husband and I would never be in the position where we would be having that conversation because our relationship and personal satisfaction in life doesn't rest upon us being able to conceive. His mother had to receive fertility treatments to even bring him into this world, so he knows better than that. He also doesn't expect me to be responsible for his feelings and emotions. But if through some cartoonish series of events he was hypothetically coming to me with such a dilemma, there is only one thing I could say at that point.

"That sounds like a You problem."

It is not my job to make my husband happy. It is not the job of me and my body parts, such as they function, to fulfill every expectation he has in life. He's an adult who is responsible for his own feelings, emotions, disappointments, and the redirections we each get handed by life. He still has to wake up and do those things for himself every day if we never end up having any children.

If I can wake up every day and confront the reality of what infertility means for my life, my health, and my ongoing happiness, so can he.

It is not my responsibility to shield him from the effects and consequences of the health conditions I've had for all of my life. 

I'm still trying to figure out exactly how I was supposed to answer this question. Be okay with him divorcing me? Allowing him to take a mistress? Stealing a baby from the Walmart parking lot? 

What was I supposed to say?

You are not entitled to have children!

Your spouse is not responsible for giving them to you. And if you find yourself in a marriage where you haven't gotten your way on children because of infertility, let me tell you a secret: 

Your spouse still has it worse than you. 

Infertility is hard for spouses with healthy fertility. No one is disputing that. 

It's still harder for the one experiencing the infertility, especially when the infertility is related to a chronic illness. 

Feel your pain. Feel your loss. Feel whatever you need to feel. But be half as strong as your spouse is by not taking that pain out on them. 

Do not make this devastating situation any worse by making it all about you.

What's it like having Infertility in the LDS Church

The high councilman's talk about the sacrifice of having and adopting a total of nine children was too much for me today. So I walked out.

The foyer was full of people with babies, which didn't help at all. I went to the bathroom to stifle my tears, only to hear his voice piping in through a speaker.

I figured out how to turn the speaker off and was in the midst of shaking my fist at heaven from within a stall when I was interrupted by a mother coming into the bathroom with her young son. She was unreasonably scolding him for not being perfectly reverent. They exit.

I was then asked to substitute in Nursery. I said yes before I could think of an excuse to say no.

Somehow, infertility didn't seem like a good enough reason.

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