It’s Pregnancy and Infant Loss Awareness Month. As many of you know, I’ve done a series of Facebook video posts this month on the topic where I’ve shared my experiences with both recurrent loss (4 miscarriages & 4 corresponding D& Cs) and adoption (one story being happier than the other). If you missed them, you can watch them here:
In the course of those live posts, I got lots of great support & feedback, and also heard lots of other heartbreaking stories. I also had a couple of generous Simple Balance followers offer to share their stories on this blog to help raise awareness & sensitivity on this devastating subject.
Here is M’s story. She’s sharing it in the hope that it will give those of you supporting a couple going through infertility, loss and/or adoption more sensitively. When I read it, I cried. She’s bang on with her advice. So much so that I plan on sharing her tips for “what not to say” in another FB live this week in the hopes of reaching more people. In the words of M:
“We’ve tried it.”
For real. We’ve tried everything. The decision to proceed with fertility treatment was a really heavy decision to make and we took a long time to get there. Every single month revolved around my cycle – and every month brought its own cycle of hope and heartbreak for quite a few years. Before committing to invasive and expensive fertility treatments, we tried everything we could to increase our chances of getting pregnant on our own. We consulted with friends who had gone through this, we consulted with our doctor, naturopath and fertility specialist. We tried special teas, tinctures, seed cycling, supplements, massage and acupuncture, and even fertility friendly lube (because apparently vaginal pH is inhospitable to sperm without this special $30 bottle of lube, or so they say…seems like pretty unintelligent design to me…). We spent a LOT of time and energy (and money) trying our best to get pregnant without having to go through fertility treatments. At the time, we were in the boat of ‘unexplained infertility’. It wasn’t until we were through our second round of IVF that we found the root cause of our infertility – poor egg quality. By the time that diagnosis came, it meant that our options were limited to donor eggs or embryos.
In short, I’ve been pregnant once (miscarried at around 10 weeks), tried two rounds of IVF, and went to the Czech Republic three times for donor embryos (4 embryos total – because once we tried for twins). I’ve had a hysterosalpingogram, sonohysterogram, hysteroscopy, endometrial biopsy, and enough sets of bloodwork and pelvic exams to feel like a walking science experiment. For this blog post, I didn’t want to re-hash the different treatment options we considered and tried. Rather, I wanted to go through what we’ve learned from them – like how to support your friend going through infertility and loss. I also wanted to share some pieces of advice for anyone struggling with infertility themselves.
Here are a few examples of things we’ve heard over the years, what’s troublesome about them, and what a better approach might be.
- “When are you having a baby?” or something of the sort. This starts probably 5 minutes after you get married or are in a committed relationship. The problem with this is that it doesn’t actually open up meaningful conversation because it leads with an assumption. There are SO many people who don’t want kids, yet they’re constantly bombarded by people questioning their choice. There are so many people in the early stages of infertility who are really uncomfortable with that question, because the answer is “I don’t freaking know!! I’m trying everything but something must be wrong with me…”. If you’re actually interested, a better way to ask that question is “Do you and your partner want kids?”. This lets people open up about whether or not they want kids, and gives them a chance to say something like “Yes, but it’s not really going as planned…”.
- “Have you tried…?”. Yes. We have.
- “It’s all part of God’s Plan.” Or “The universe has a plan for you.” Or “maybe it’s not meant to be”. This one bugs me because it’s so dismissive of how hard this experience is – I doubt most people would say that to someone dealing with another illness. All you have to say is…I’m so sorry you’re going through this. I’m here for you. This realllllly sucks. Period. Wine helps too.
- Complaining about kids. We’ve heard plenty of people tell us about how difficult parenting is, and we don’t doubt that for a second. I know I’ll never know HOW difficult it is until I’m there, at which point I’ll be questioning why the heck I gave up the life of leisure I have now. Having said that – I’m confident – that parenting comes with a tiny little smattering of Joy on occasion, which makes the struggle worthwhile (sometimes?). With infertility, there’s pretty much NO joy whatsoever – and many parents will never know what that emptiness feels like. Infertility and fertility treatments are HARD. Couples undergoing treatment have had nothing but time to think about whether they want to be parents badly enough. If your kids are getting to you, find another parent to vent to, and see if there’s another way you can support your infertile friend (maybe they’d love to take your kids for a day?).
- “So and so adopted, then got pregnant.”, “maybe you need to just stop trying”, or even ‘just relax!”. These stories are really hard to hear. I love hearing when things work out for people, I really do. But the thing is, just because that happened to someone else, doesn’t mean it’s going to happen to me. Infertility has many different causes, both male and female related. I think these stories are great, but we remember them because (a) they’re happy, and (b) they’re uncommon. So, it’s a bit of a false claim, that all you have to do is give up trying or start something else, and you’ll get pregnant. What we don’t hear about is all the people who go through these processes and still don’t end up with a child.
Wendy is a very close friend of mine, and as you now know, she’s suffered multiple miscarriages, adopted one perfect baby boy, and gave birth to her own perfect baby girl. I have another really close friend who had a baby after multiple failed fertility treatments. These women can’t stand having their story told to people like me as ‘encouragement’ when I’m grieving losses related to infertility. First of all, telling only the happy parts of their stories is really dismissive of the mountains of heartbreak these women and their partners endured. In each of these cases, their ‘happy ending’ of finally becoming parents was followed by additional pregnancy loss and heartbreak, and that shouldn’t be dismissed either. These women understand that everyone’s pathway through fertility treatment is completely different from each other, so it’s not fair to draw comparisons between people.
The other thing I don’t like about these stories is that they imply blame in a very subtle manner. It’s like you’re saying that if I was thinking or feeling a different way, or doing things right, that the outcomes of my treatment would be different. In other words, it’s my fault that this isn’t working. I don’t doubt that stress plays some role in infertility, but that feeling of blame can be really toxic. We’re already probably blaming ourselves for x, y, and z. Please don’t add to it.
- Invitations to baby showers and pregnancy announcements. These are tough for those of us struggling with infertility. Please keep inviting us to baby showers – but understand that when the day comes, we may not feel like coming and it doesn’t mean that we’re not happy for you or resentful towards you. It’s just that some days (maybe most?) we don’t feel like watching people open cute baby clothes, hear horror stories about childbirth, or get peppered with questions about when we’re having kids from nosy aunts. Most days I’d rather crawl under a rock than attend a baby shower – only because it’s a very vivid reminder of what I’m missing in my life.
- Pregnancy announcements are tricky as well. Honestly, each time I hear someone is pregnant, I’m *thrilled* for them – but really bummed out for myself for not being able to share that experience, and I used to cry each time I heard someone else was pregnant. That’s not the response that you deserve when you’re sharing happy news – so if you know someone is struggling with infertility, let them know either one-on-one, or even by text – so they can have their moment and cry it out, then celebrate with you without feeling like they’re being a Debbie downer.
- Overall, do your very best to avoid saying anything dismissive. Try to put yourself in the shoes of people struggling with this, and if you’re not sure how to support a friend dealing with infertility, google it! Plenty of people have expressed this more eloquently than I have. Tell people that you love them and are thinking about them, reach out and ask questions about their treatment. Just show up… with wine.
To those struggling with infertility:
- Get insurance before you think you need it. We had great medical coverage, but fertility medications aren’t always covered, and they weren’t under our plan. By the time I tried to purchase additional coverage, I had already seen a fertility specialist. Because I had seen a specialist, I was denied coverage for fertility medications. Treatments aren’t covered in Nova Scotia, but some drug plans cover the cost of medications. During my second round of IVF, my daily dose of injections was more than $700/day, which I could’ve saved if I had gotten the proper insurance earlier (or if I had lied on my insurance application – but I’m a terrible liar!). If you have an inkling that you might ever need coverage, apply early.
- Educate yourself. Go to an IVF information session at the IWK, meet with the fertility specialist, and chat with friends who have gone through this if you can find them. Start asking around – if you think you don’t know anyone who has gone through this, chances are you’re wrong! It’s SO common!
- Advocate for yourself. With your family doctor, naturopath, fertility specialist, etc. In most places, you don’t need a doctor’s referral to see a private fertility clinic – you can self refer. The clinic in Halifax is AMAZING. They’re professional and clinical with very high standards, yet they’re also very warm, empathetic and friendly. I can’t say enough good things about them. Here in Halifax, the one benefit of having a referral from a family doctor is that your initial visit will be at the IWK, not at the fertility clinic, but it’s often the same doctor who works at both places. She’ll refer you to come see her at the clinic, then since you’re already a patient of hers and you can save the cost of the initial assessment. A good option if you’re prepared to wait for an appointment to see the fertility specialist at the IWK.
- Before doing IVF or IUI – ask your fertility specialist about a blood test called AMH (Anti-mullerian Hormone). It’ll measure your ovarian reserve, and will give them a good indication of proper dosage of ovarian stimulation medications. It’s not in the standard suite of tests they recommend for everyone, and there is an additional cost (about $150), but in our case it would’ve improved the outcome of our first failed cycle.
- Find support. Fertility clinics will often recommend a therapist who specializes in infertility – take their advice! You’ll need a lot of support around you. We didn’t go to a professional therapist, but we had an abundance of support around us, including an incredible social worker neighbor who was like my personal (and free!) therapist! Support from others who have gone through treatment is invaluable as well – it helps to sit and chat and cry with someone who really gets what you’re going through, and we can learn SO much from each other!
- Tell your friends and family what you need from them. And call them out (respectfully) if they say something hurtful. Sometimes you want privacy, and sometimes you want them to check in and ask how you’re doing. They might not know what you need if you don’t tell them (easier said than done, I know).
- Keep checking in with how your partner is feeling. In my experience, men and women deal with this whole process very differently, so it’s super important to communicate with each other. Go to therapy together if you need, go for date nights, Heck – have sex for fun – maybe when you’re not even ovulating. Crazy huh? ?
- Take care of your body!!! I was so frustrated and disappointed in my body for ‘failing me’, especially since I take such good care of myself. Yoga was my go-to, for everything it does for my body, mind and stress levels. As a bonus, hot yoga is a great place to cry it out! Not even joking! Exercise of any kind is key for improving your mood, energy, sleep, and keeping your stress level in check. Just check with your fertility specialist to confirm that what you’re doing is safe, especially during or after treatment, because your body is going through a LOT at that time. Even if conventional exercise isn’t your thing, get outside for a walk in the woods to clear your head – you’ll need it!
- Let someone at work know what you’re going through, preferably a supervisor. I can’t count the number of times I left the office in tears, just sat at my desk crying, or had to show up late because of morning appointments. My co-workers would’ve thought I had gone completely mad if they didn’t know what was going on in my personal life. I’m SO fortunate to have amazing bosses who 100% understand the world of infertility. They were two of our biggest supporters through this process. If you’re not able to tell anyone at work, try to take some time off if you’re able, or just let someone know you’re undergoing some medical treatment and may need some flexibility in your schedule.
- Don’t do home pregnancy tests after fertility treatment if you can avoid it – it’s a mind f$#k and you won’t trust the results anyway! Trust me on this one. Wait until the scheduled blood work and do anything you can to keep yourselves distracted during the dreaded two-week wait for test results.
- If you think adoption may be in your future, start that process early. Go to an information session about adoption, and be as vague as you can about any ongoing fertility treatments (don’t lie obviously, but be vague if you’re comfortable with that!). Adoption is an incredible and beautiful way to build a family, but it can take a long time, so start early!
- Know where your limit is. It’s OK to stop pursuing fertility treatment if you feel you’ve had enough. Everyone has their own limit to what they can handle emotionally, physically, mentally and financially. In my case, there’s no reason that embryo donation wouldn’t work if I wanted to keep going to the Prague clinic for treatments. I had a pretty terrible breakdown leading into my last treatment and promised myself I wouldn’t put myself through this again. We won’t actively seek heartbreak in the form of fertility treatment again. Now we’re moving on with some relief knowing we did all we could tolerate. It’s such a heavy decision to get off that train.
- Most importantly, Be kind to yourself. You’re doing the best you can and this is not your fault. This is a really hard process, but I think it gets easier with time. I don’t cry at yoga anymore, so that’s good right? ?
Moving forward – all we can do is try our best to acknowledge all of the great things we have in our lives right now, without kids. Adoption is a very real possibility for us and we’re so excited at the thought of giving a loving home to a child (or children!) who need it, but I know we’ll always carry some grief in not being able to experience pregnancy ourselves. Once these kids find their way to our house, I’m sure that will fade to some extent and we’ll wonder what the heck we got ourselves into! But we’ve got a lot of love to share and look forward to parenting together. Eventually. If not we can always get more dogs. 🙂
Thank you M for sharing, I know this post will help many. x