the benefits of joining a support group: My infertility story
Going through infertility is one of the hardest things a woman can face in her lifetime.
According to the Mayo Clinic, research shows that women with infertility have the same levels of anxiety and depression as do women with cancer, heart disease and HIV.
As a breast cancer survivor who subsequently dealt with infertility, I can honestly say that this is true.
Infertility causes all sorts of stress: finances, hormone fluctuations, partnership, and career; envy and resentment of friends and family members and the resulting isolation and shame; grief and sadness associated with failed cycles and losses; and worst of all, the fear that you will never be a mother.
1 in 8 couples experience infertility. That’s a lot of people. That’s a lot of stress, loneliness and pain.
My own infertility story started almost exactly 10 years ago, when I was unexpectedly diagnosed with breast cancer at 28 years old.
At the time, I was single and had just started out my career. I wasn’t thinking about kids and always just assumed I would have them at some point in my 30’s.
But during my 3-hour long consultation with my oncologist, that plan was ripped to shreds.
Not only would I lose my breasts and my hair, but the chemotherapy I needed could cause me to go into permanent menopause and be infertile.
I was devastated. Suddenly and with no warning, a rite of passage that I had always just taken for granted was being denied me.
After some negotiation with my oncologist, who was concerned about the safety of injecting myself with hormones with a breast cancer diagnosis, I was allowed to do one cycle of egg freezing.
Medical advancement in oncofertility and in fertility preservation in general has made massive strides over the last 10 years. For example, now fertility preservation is the standard of care in young women with breast cancer, despite the hormone injections.
I was diagnosed right at the time that a new freezing technique called vitrification (flash freezing) was beginning to be used with eggs. Prior to that, eggs were frozen using a slow freezing technique and often did not survive the thaw later on. For that reason, they used to recommend that you freeze embryos instead of eggs.
As vitrification was still rather new, I was encouraged to pick a sperm donor. Can you imagine being diagnosed with a life-threatening illness, and while you are going through scans to determine whether the cancer has spread to places like your brain, someone is telling you that you may never have a biological child, and that you need to foreclose the option of having one with your future partner?
I mean, it was tough.
I started combing through sperm bank profiles, and felt overwhelmed and depressed. My friends tried to make it a fun process by suggesting that we have a sperm donor party, but the idea of a party just made me feel even worse. No one could understand the deep sadness I was going through. I felt so alone.
Thank God I researched vitrification and ended up pushing back. I can’t tell you how important it is to be knowledgeable and educate yourself about fertility treatments. I’ll be talking a little about the benefits of support groups later on, but one thing I want to mention here is how important it is to have access to a group or community where information is being shared. In fact, my IVF checklist which I’ll be sharing next week, is a combination of my own wisdom and that of some of my close friends and old support group members who went through infertility with me.
Unfortunately, my one cycle of egg freezing before chemo didn’t go so well. I ended up only freezing 5 eggs, 3 of which are of questionable quality. (For reference, a “good” result in a 28-year old woman would have been somewhere between 10-20 eggs.)
In some ways, this turned out to be a blessing in disguise, because even though my period returned after I finished treatment, I was now aware that fertility was likely going to be an issue for me.
As I approached the magic age of 35 when apparently all of my eggs would shrivel up and die (I’m being sarcastic, although it is around this age that statistically egg quality does start to decline more rapidly), I began to consider freezing more eggs. In fact, I had just started dating my now husband when I froze more eggs, and then after we got engaged, we froze some embryos.
I wish someone had told me that period does not equal fertility. I wish someone would have told me how to prepare for an egg retrieval (there is SO MUCH you can do to make a difference in your results).
As predicted, both times the yield was lower than what would be expected of a woman my age. Statistically, we now had about a 78% of having 1 kid out of all of the gametes in the freezer. There went my dreams of a large family.
We got married when I was 35 and immediately tried to conceive. I was so hopeful and naive. I really thought that it would just happen for us. Well, it didn’t. But again, luckily I was already hyper aware of my own fertility issues and so I did not delay seeking help.
It took 3 rounds of intrauterine insemination (which all failed), 5 more egg retrievals and 3 embryo transfers to get pregnant. Baby Ella is now 9 months old :)
During those nearly 2 years, I injected myself with hundreds of needles and drugs that caused me to feel bloated, nauseas, exhausted and crazy. I had a rare complication from a retrieval (this is where you get put to sleep while they extract eggs from your ovaries with a needle) and ended up in the Emergency Room with a severe bleed in my abdomen. I received dozens of pregnancy announcements from friends, pictures of their ultrasounds, invitations to baby showers, and birth announcements.
I had never felt more alone in my life.
My therapist at the time recommended a support group that a colleague of hers facilitated. I immediately applied and was accepted into the next cohort.
I can’t tell you how life-changing joining this group was for me. Sure, I was in some groups on Facebook, but actually sometimes those groups caused more anxiety than anything else.
This was different.
I got to meet 5 other women face-to-face who were experiencing infertility, just like me. Finally, I had somewhere to go and a safe space to share my feelings, to be validated, to be held. This group became so important to us that even after the 6 sessions with the facilitator ended we continued to meet. I was the first in the group to get pregnant (several of the others have now either given birth or are pregnant as well), and we are still friends to this day.
Infertility doesn’t end when you get pregnant, as anyone who has ever had a miscarriage can tell you, nor does the pain and trauma go away after you finally hold your baby in your arms. I am still healing from my infertility journey.
Part of my healing is to create meaning and purpose out of my experience. I did this with breast cancer when I created Thrivacious, a non-profit that supports women touched by cancer.
So I asked myself, what can I offer other women who are going through this? What do I wish I would have had?
Well, first of all I can offer my words of advice, my wisdom and my knowledge. I did a LOT of research on fertility treatments, doctors, labs, techniques, etc. Next week I’ll be publishing my IVF Success Checklist, so make sure you are on my email list if you want to receive a copy!
But secondly, I am an experienced group facilitator and coach, and so I can also offer a safe, confidential space for women, like the one I had, to connect, share, get support, and learn some key resilience tools that can help make the journey a little easier.
Therefore, I’ll be offering virtual fertility resilience circles. A resilience circle is a committed, intimate and structured coaching support group for women experiencing infertility or recurrent pregnancy loss.
The group will consist of 6 weekly sessions and will integrate mindset, mindfulness, and writing exercises with supportive sharing and listening. We will meet virtually, on Zoom. Participants must be in a private, quiet space and be willing to join with video.
The cost is $180 for 6 sessions. Discounts may be available for those in need of financial assistance.
Learn more and apply here: https://www.alonashaked.com/resilience-circle-infertility
*Please make an effort to share this information with your network. Again, 1 in 8 couples face infertility at some point, and some are too ashamed or private to let others know what they are going through. As a result, they get even less support and do not always find helpful resources like this.