Shortly after receiving my PCOS diagnosis, a question presented itself. It’s the same question almost anyone who struggles against infertility faces: what, and how much, do we tell other people? How do we answer the inevitable questions about having children, do we want children, or the comments about biological clocks?
It’s a tough call. When I stumbled out of the doctor’s office into the bright October sunlight three days before my 30th birthday, my doctor’s words about “not ovulating” or “polycystic ovaries” or “probably won’t conceive without some sort of medical treatment” ringing in my ears but not sinking in yet, the ramifications of the diagnosis hadn’t entered my mind. The only people I told were Arthur, who had a vested interest in the outcome, and my mother, who knew I was going in for testing.
That weekend, we were going out of town and visiting some friends from college, so conveniently, I just pulled a Scarlett O’Hara and decided I’d put off doing any serious thinking about the whole thing. I had no idea what to think. Truthfully, at the time, I knew getting a diagnosis like this was a big deal, but while I was mildly concerned, I figured it would be over in a few months. So telling people (other than some close family members) seemed sort of silly when it was something I could keep private. I didn’t really want to tell everyone we were trying to conceive and have to bring up, even in the most careful context, sex. I dipped a toe into the infertility pond, checked out some sites, even made an anonymous comment or two, wrote a post or two for my blog, then abandoned the whole project. I didn’t want to talk about this.
Then came the “it’s not working” reality check and a referral to an RE in December. All of a sudden, PCOS and the accompanying infertility didn’t feel like something that would resolve quickly and quietly. I was devastated, as in sobbing uncontrollably at random times. For the record, I hate crying, especially in front of people. But I couldn’t entirely control it, and the tears would start, sometimes without warning. Once I finally recovered enough to quit with the constant barrage of tears, I realized something: if someone made a crack about kids at me, or asked me one of those questions, there was a fair chance I’d start crying.
There’s also a good chance also with all the “bigger and badder” treatments and the intensive monitoring that those entail as well as the unpredictability inherent in infertility treatments that I’ll have to take time off work or switch co-workers for days off to coincide with cycle timing. The fact was, in my case, people were probably going to start finding out at that time.
The final argument for going public to friends and family was the shame factor. In October, one can debate the pros and cons of the pink ribbon, how the money is spent, or whether other cancers/diseases should get more money and publicity, but no one can debate that breast cancer is now not spoken of with shame and hushed tones. It is no longer a disease women have to hide or worry about someone finding out. Some women choose to keep their diagnosis quiet, a perfectly legitimate, understandable, and acceptable option, but no longer do they have to remain quiet or face censure from society.
I didn’t want to talk about what was happening to me and Arthur in hushed tones. I didn’t want it to be a secret, something people might have heard in rumors but were too afraid to say anything to my face. I didn’t want to have to explain after I snapped at someone or burst into tears when someone made an unknowingly insensitive remark and I had no control over having to explain or the time and place. Choosing the time and place and having a carefully drafted remark when people found out was probably the biggest issue for me, and the only way to really control the secret was to let it out and force it to no longer be a secret.
So I thought about it for a while. I wrote and rewrote drafts of what I wanted to say. I knew I wanted to do it through writing, where I could come up with exactly what I wanted to say and cry afterwards without anyone seeing the tears live. Finally, one morning, I posted it to facebook as my facebook friends are comprised of my real life friends and family. I didn’t talk much about the disease or treatments itself, just kept it low-key saying that Arthur and I are the “1 in 8” who struggles with infertility and noted that we could use people’s prayers and support.
In my case, I’m glad I did it. I heard stories from people about their own journeys that I’d never realized. I got supportive nods from lots of my friends and family. Now there is no reason for me to wonder if someone knows or not. There is no angst about telling someone who doesn’t know, because it’s not a secret.
I don’t want to insult anyone here or make anyone feel like they should tell or not tell. There are myriad reasons people don’t want to tell others. Friends and family might not be supportive. Plenty worry that someone will ask them to discuss the gory details of treatments or take an *ahem* prurient view that feels more like an inquisition of one’s intimate life. Advice, some insulting or unhelpful may be offered. Some just don’t want to discuss it, period. Really, it’s an individual choice and different for every person – and if it helps you to cope to keep the whole thing quiet, that’s what works for you and I certainly don’t want to judge that.
There are things even in openness I keep semi-private or private. As you may know, I blog here under a nom de plume (or a nom de guerre it feels like some days!). This isn’t because I’m ashamed of my diagnosis or my condition, and some of the information I give out would make me pretty easily identifiable to people who know me well in real life or know a few of my quirks of speech.
It’s more because I’m a little too repressed or reluctant to discuss the more “nitty-gritty” aspects of treatment (like transvaginal ultrasounds, periods, my ovaries, my not-always-socially-acceptable feelings) connected to my real name yet – this allows me to essentially write uncensored for right now in a way I couldn’t do otherwise. There’s a part of me that knows medical tests and treatments are just that – medical treatments and tests that happen to be on my reproductive organs. The other part of me still finds myself blushing and steeling myself every time I step into an examining room, pulling off everything below the waist and exposing places I’ve always considered very private.
At some point, I suspect I may come to disclose my real name. One step at a time, though.
If you have any good stories or suggestions about talking about infertility with family, friends, or co-workers, I’d love to hear them!