If you’ve stumbled quite randomly across my site, you may not know that we struggled with infertility and loss for a couple of years before we had our little boy, Finley.
I read this post by Alice Rose and was moved to join her campaign for health and medical professionals to receive better training to support patients dealing with infertility and or loss and for the stigma surrounding infertility, miscarriage and baby loss to be broken, so that friends, families, employers and colleagues know what to say to show they care.
The struggle is real
Struggling with infertility is like going through the five stages of grief: you deny, bargain, get angry, cry and accept. Every. Single. Month.
The relentless cycle of hope, soul-crushing disappointment, denial, anger, jealousy and shame is punctuated by invasive gynaecological procedures, pregnancy announcements from others and countless sleepless nights spent researching complex scientific concepts, fuelled by a cocktail of powerful fertility drugs if you’re on the IVF train.
What makes the struggle really hard to navigate though, are thoughtless comments tossed into conversations like little hand-grenades. Now, it’s important for me to point out that along the way, I’ve probably put my foot in it somewhere, so the purpose of this post is not intended to bash anyone. The vast majority of people mean well and are only trying to think of something to say.
But, if you work in the health service and your job involves dealing with patients who are struggling to have a child or who have lost a child then it’s fair to say you should know better.
Here are some of the insensitive and painful things that health professionals said to me during our struggle.
What health professionals shouldn’t say…
- “Just try to relax” (said in a snappy manner) during a very painful gynaecology procedure.
- Referring to the baby I was miscarrying as “the pregnancy” or “products of conception”.
- “How many weeks pregnant are you?”, from a medical receptionist who had my notes and was checking me in for a miscarriage progress scan).
- “At least you know you can get pregnant”, said frequently during and after my miscarriage.
- “It’s a real mess in there.”
I found the last comment so upsetting, and to be honest, I still can’t repeat it without weeping, two years on. The comment was made by a sonographer during a progress scan to see if my miscarriage had completed. That “mess” was our much-longed for and loved baby.
Simple changes that can help
- Print the comprehensive list of What Not To Say from Alice Rose’s article and stick it next to the kettle in your clinic.
- Avoid seating women struggling with infertility or loss in a room full of pregnant women. It’s common practice and it just shouldn’t be. It’s insensitive at best and at worst, can be very traumatic. If it’s not possible, let the patient know she can sit in another area close by and someone will come to collect her.
- Use the terminology in the medical notes if necessary, but please, just say ‘baby’ when speaking to patients experiencing miscarriage. To use other terminology lacks compassion and recognition of the loss of their child.
- Avoid using the phrase “at least”. Seriously, nothing supportive, constructive or helpful ever came out of using this phrase.
- Instead, T.H.I.N.K. Is this:
How can I help?
So, what if you’re a friend, family member or you work alongside someone who’s going through this shitstorm? Well, first off, please know and understand that bouts of depression, exhaustion, anxiety, jealousy and emotional or irrational behaviour ride shotgun with infertility and child loss, so please cut them some slack.
If you’re someone’s employer or work colleague, it’s also important to understand that IVF medication can cause mood swings and brain fog, meaning that your usually calm, switched-on team mate may be emotional, distracted or forgetful for a little while.
Jules Furness, founder of Hope Squad, an IVF diary and not-for-profit shop says, “It feels like your brain is trying to work while covered in treacle! I’ve forgotten the most simple things like the year we are in! I couldn’t for the life of me work out why I couldn’t put a fresh duvet cover on the right way and I get projects at work mixed up. It shows the importance of having a superior at work you can confide in.”
What not to say…
- “Have *Name* for the night, he’ll sort things out!” Yes, someone actually did say this to me.
- “Have you considered adoption?” Adoption is amazing but not everyone feels able to choose this route to build a family, so it’s best to let them raise the subject if they are considering it.
- “At least you know you can get pregnant.”
- “At least you miscarried early on.” Well, thanks!
- Any variation of “at least”, for instance, “just”. Using these phrases undermine the person’s grief.
- “Everything happens for a reason” or “It just wasn’t meant to be”. You may truly believe this and have the best of intentions, but believe me, it’s NOT helpful to suggest there’s a good reason behind the death of someone’s child.
- “Have my kids for the day, you’ll soon change your mind”. This feels like a reminder of the children you don’t have.
- “Just relax and it’ll happen”. Infertility is a disease of the reproductive system, requiring investigation and medical treatment, you can’t relax it away.
Say this instead
- “I’m so sorry you’re going through this, please let me know how I can help you.”
- “We want you to know it’s ok to avoid family events if you don’t feel able to attend and we would love to spend time with you in a child-free scenario if that helps. We miss you and think of you.”
- “I’m so sorry for your loss, do you want to talk about it?”
- “I understand if you want some space, but please know I’m here for you if you ever want someone to talk to.”
If the ideas above don’t quite work for your situation, how about a kind gesture instead?
- Say it with a book. Sometimes, a book with a kind message inside says everything you feel too awkward to say in person. Here are my top 5 book recommendations.
- Say it with a gift. Hope Squad has a range of beautiful IVF and adoption milestone cards, mugs and t-shirts and 100 percent of the profits go to charities associated with infertility, IVF and disadvantaged children.
- Say it with something pineapple or rainbow themed. Pineapples are good luck symbols of the trying to conceive (TTC) community and are used to show strength, love and support for those going through fertility struggles. A child born after infertility, miscarriage or child-loss is often known as a rainbow baby, because they are the beautiful outcome of a stormy time.