Tag: Fertility

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Chronic Disease Politics

Day 142 and Optimism

The pandemic has done more to improve my life than to it has hurt it. I have a little survivors guilt as I am not far from family and friends that have suffered but I was lucky. Part of my luck has been tied to my privileged place in society. I was able to enjoy housing flexibility and leave behind an expensive city apartment for a townhouse in my hometown. I was always able to work from home with little fear my income would be impacted by disease or even negative secondary effects. Nevertheless I haven’t felt much optimism until recently.

Part of my lack of optimism has been tied to my health challenges. It’s been two years of working to get a diagnosis, stabilize my spine, and get the secondary symptoms controlled. There were low points when drug regimens didn’t work. Or when it seemed like the fatigue or pain would keep my life away even when primary concerns were improving. I was genuinely terrified going into the pandemic as it did cut off my access to typical doctors visits and more hospital setting delivered care.

But I’ve found significant improvement over the past six months thanks to excellent remote care I was able to receive from functional medicine doctors. It’s almost as if with the operational and physical logistics of care removed the actual outcome of my care improved. I was able to get to the heart of a diagnosis and hone in on effective treatment protocols more quickly. Thanks to this improvement I’ve come to find my optimism again.

Not that I think the world is getting better. If anything I’m far more worried about the many axis of American failure. Our politics has become authoritarian. Our economy increasingly serves only the entrenched and already wealthy. Our interest in mitigating climate change remains low. It’s so bad the best we can do is chuckle at why millennials don’t have kids. It’s because they are selfish right? Nothing to do with how hard it is to trust that the system will ever work for you so why bother investing in the future?

But I am intrigued by the opportunities afforded by the chaos. There is money to be made adjusting us to new realities. Maybe by dint of accidental or unexpected changes we find innovations that change our world. Maybe those will be for the better. And maybe I can help nudge along the better outcomes. And for the first time in a while o believe my body will be up for the challenge. It’s nice to be optimistic.

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Chronic Disease Chronicle

Day 103 and Regret

It’s culturally acceptable to say “oh I regret never having children” but somehow we rarely hear the opposite. I understand that parents who regret having children do not want their children to feel unloved. For that reason perhaps it’s the kind of feeling you take to your deathbed.

Or you post anonymously on Reddit. But for the sake of children feeling loved and wanted, I do think we should discuss it openly and in public with more honesty.

At this point in my life I don’t think I feel joyful about having children of my own, despite having pursued fertility treatments (which if I’m honest about was partially an insurance policy to let me put off the decision). If I have a child, I will need to resolve my anger and regret about how egg freezing lost me a decade of my life. It sent me on a path of severe chronic illness and I wouldn’t want my child to feel that my anger about being sick was ever any fault of theirs.

And maybe this is why we have no cultural space to discuss regret. We don’t want our kids to ever have access to the complex feelings we have as humans about our anger or sadness.

Imagine how a child could extrapolate feeling anger at a sickness that was related to their conception. Jesus fuck. I don’t think I’d regret having children. If I ever bring my health challenges up, I ever hear is “you will regret it if you don’t take the risk to have them” which just isn’t that helpful.

But you know what isn’t helpful? Never discussing regrets till it’s too late. Till you are doing something because it’s culturally normal. What kind of bullshit is that to put on a child? “Mommy got told that she’d regret it if she didn’t have you.” That seems like a recipe for Mommy very much regretting her decision.

I pray that the hormones that bond us to our offspring work well enough that no parent or child is ever put in this position. I pray that evolutionary instincts make it so unlikely that one regrets having children.

I worry some people simply didn’t want to have children but the expectations of life and culture didn’t make that feel acceptable. I hope more people talk about that fear. I don’t know exactly how I feel but I do know that no one should do shit on the advice that “they will regret it if they don’t.”

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Chronic Disease Chronicle

Day 18 and How Much Money Did My Unborn Child Make You?

I’ve never been much of a privacy nut. I figured I came of age too far into surveillance capitalism to ever truly recapture the dignity of my own body. I thought the classic tag “Your Privacy Is An Illusion” on Gawker was genuinely funny. What was the worst that could happen to me?

I was an early adopter of quantified self. The industry’s rise dovetailed just well enough with the security Obamacare provided. By outlawing insurance companies from discriminating against preexisting conditions I figure it was safe to use my data to improve my health now.

Prior to that I engaged in various bits of dodging having my chronic conditions logged, avoiding telling doctors I took even the most banal of medications like a daily allergy medication. After it passed I joyfully logged everything.

In hindsight, this may have slowly shifted my mindset towards my own commodification. Again, an issue never at the forefront of my mind as I worked in aesthetics. My job has often relied on putting metrics on the physical ephemera of bodies. But the inexorable progression of viewing my body as a commodity led me to a terrible choice: I froze my eggs.

At the time my husband and I were busy with careers. We had the disposable income to “buy an insurance policy” that would allow us to treat a life altering decision like having children with the casual mindset of buying an insurance product or making a moderately sized investment decision.

We were referred to the “La Mer” of fertility clinics by a friend who had successfully conceived through their help. Mind you we didn’t know if we had fertility issues, this was purely about optionality. Indeed genetic testing didn’t reveal anything shocking. We did it because we thought “why not, it’s just some money” as we may regret not having given ourselves the option. God damn we were stupid. We got sucked into the marketing hype.

Freezing my eggs was invasive in a way I simply couldn’t conceive ahead of time. No pun intended. I thought it was some extra time and drugs. At every step of the process our fears and questions were allayed with the utmost professionalism. The risks were low was repeated over and over.

It felt like we were buying a mutual fund. Sure there were some risks in the fine print but really we were investing in our future. It’s only now that I realize if I thought it was such a wise investment why were both sides so clearly invested in the transaction closing? The legalese and paperwork ran was hundreds of pages.

Surely at some point someone would have pointed out it’s not without risks. And it’s also not remotely guaranteed. The cohort of women in my social circle were all sold on the benefits of egg freezing with its potential to finally liberate us (from what who knows) only to find it was just another product that had a high price tag physically and emotionally.

You see pregnant women are worth a lot of money to data brokers and advertisers. So of course the people at the start of that arc are going to cash in on that land grab. The clinic was getting upwards of $30,000 from a few months of care from me. Plus a subscription fee to keep them on ice. No wonder the egg freezing game is quickly becoming a status symbol for the upwardly mobile making it just another purchase for well funded venture backed millennial girl bosses.

I’m honestly astonished no one said a fucking thing. Not a peep. Just a glance at the fine print. No maybe you should talk to a counselor. No here is what could go wrong. No here is how you might feel. No disclosure or discussions of some of the outlier cases of how these hormones might impact me. Where were the angry right to life folks when I needed them? All those abortion laws that tell women the risks might have actually been useful here. Ironic huh?

Because I wasn’t a picture of health. I’d struggled with some inflammatory conditions as a kid along with a never ending parade of “allergies” and aches and pains I mostly ignored with an Advil. But no one ever brought up that being stimulated to produce eggs for harvesting might set off a chain reaction with my latent autoimmune complaints. Highly unlikely anything goes wrong. It’s low risk. It’s just not discussed beyond platitudes.

And so I thought it wouldn’t be a big deal. Except that it was. After two rounds of retrieval (11 eggs of which a portion are fertilized) life was supposed to go back to normal.

Except that it didn’t. Slowly but over time I became quite sick. I developed an autoimmune disorder that leaves me in constant chronic pain. I had to sell my startup and stop working entirely.

Of course, it is still not definitive that the hormone treatments kicked off my illness but the endocrinologist and the rheumatologist tell me it’s the most likely culprit. So what I want to know after having my life completely torpedo by an elective procedure, is who made money off my unborn children? Children I may never have as (updated on 12/10/22) five years later my health has not fully recovered. I am still too vulnerable to carry a pregnancy.

Who profited off my poor health? Who thought this was a consumer product? And why oh why was I dumb enough to believe them. My best guess? The business of birth is simply too lucrative for us to treat it any other way. I’m just another outlier. Maybe someone else will use those eggs and unwittingly trap their kids into the next cycle of commodification of their bodies.