Janice was a pure delight to chat with, I was moved by her story. Janice and I delved deep into the the darkness that can accompany infertility, the need to advocate for your own health in health care systems, and continue to push and push to get the answers that are rightly yours but somehow you feel like you are not allowed them.
We covered so much, I couldn’t possibly capture it all here, but what is here is a refection of the challenges in not being heard by health care professionals and the lasting impact this has on a persons life.
Thank you to Janice for steeping forward and sharing her story with us.
Could you tell the readers of Anotherhood a little about yourself?
I’m married to my husband, Hoyt, and we live on the Canadian prairies. My husband is a rancher and I work as an elementary school Vice Principal in a nearby city. My days are spent, advocating for kids and supporting families. That has been a blessing and also a difficult part of my journey. I find myself sometimes feeling as though, because I’m childless I have to prove to the world that I would have been a good mum. I love my job and it’s been fulfilling and meaningful for me especially through my infertility. It has been four years since we’ve closed the door on fertility treatments, during that time, I have done the hard work of grieving, healing, and finding new possibilities for my life.
Anotherhood is about turning up the volume of the voices of women who do not have children, can you tell us why you wish to share your story with Anotherhood?
Soon after I was married, my husband and I knew that we wanted to have a child and we started trying to conceive. We assumed that conception would be a simple and straightforward process. We took for granted that parenthood would be in our future. After about six months of trying, it became obvious that something was wrong. This was just the beginning of seven long years of infertility. During that time, I felt the shame and the sorrow of infertility. I felt completely alone. I didn’t know any women who shared similar experiences or who were leading fabulous, childless lives. I felt so much pressure to become a mother in order to be a “good wife,” to find fulfilment, or to feel “true love.”
Can you share with us what was happening in your life when you realised you would not be having children?
From the time I was a young girl, I dreamed of being a mother so my childlessness was a difficult reality to come to terms with. I had severe scarring and lesions caused by endometriosis. My uterus was badly damaged by uterine fibroids in addition to the endometriosis. I underwent multiple surgeries and multiple failed rounds of IVF. When it became apparent that IVF was no longer an option for us because my ovaries were no longer functioning, my sister offered to donate her eggs. We had two beautiful embryos and transferred both embryos. When I lost our babies after our embryo transfer, my doctor scheduled a complete hysterectomy. I was 33 years old and childless. My hysterectomy was probably one of the most difficult experiences of my life. It felt so final. I was deeply afraid of menopause and what the effects on my body would be at such a young age. As hard as it was, my hysterectomy allowed me to finally close the door on my infertility and to move forward. It was the closure that I needed.
You spoke there about your Endometrioses, and I know its very hard to get a diagnoses, so I wondered how hard was that for you to be diagnosed with endometriosis.
It was so hard. I remember, excruciating pain with by my period from the time of my very first period. I thought it was normal. I thought it was part of growing up and being a woman. I never told my Mom or anyone about my menstrual pain. When I was about nineteen years old, my pain became extremely intense and unending. I tried to manage my pain by taking handfuls of Advil but it continued to be unbearable. I went to my doctor and she said, “Oh, here’s a prescription for birth control,” as if it were no big deal. I believed that my pain was just my hormones out of balance. I continued to take birth control to manage my menstrual pain until I was 26, married, and trying to conceive.
All those years, I thought that my pain was normal. Meanwhile, endometriosis was destroying my reproductive system and fusing my internal organs together.
Reaching my endometriosis diagnosis was a long process. It started with my family doctor. I made and appointment because I was having trouble conceiving. When he heard my concerns, his response was, “Oh, women are so impatient when they want to have a baby! You must be playing hard to get. Have more sex. Don’t read in bed.”
I felt some relief after that appointment. I believed that I was “normal” it was just taking a while to become pregnant and I was impatient or not trying hard enough. After this appointment, there was also an added layer of guilt and shame that it was something that I could control that was preventing me from conceiving. Another six months went by, and still, I wasn’t able to conceive. After waiting almost one year for an appointment with a gynaecologist, I was diagnosed with large, uterine fibroids. During surgery to remove these fibroids, my doctor discovered Stage 4 endometriosis and extensive lesions and scarring.
After recovering from surgery, I underwent fertility treatments, which of course failed. My ovaries and fallopian tubes had been too badly damaged by endometriosis and were no longer functioning properly. My uterus was fused together with surgical mesh after the removal of my fibroids and would never be strong enough to carry a child. My doctor scheduled me for a complete hysterectomy. I was 33 years old.
I barely survived that time of my life. It was so hard. It felt like so much of my womanhood had been taken from me and my hysterectomy was the final piece. I believed that I had failed as a woman and as a wife.
Looking back, my hysterectomy really was the greatest blessing of my life because it gave me closure after so many years for trying to conceive. It also allowed me to live pain-free, for which I am so grateful.
What has been your experience in sharing your journey of not having children with those who are important to you?
To sum my experience up into one word—difficult. People don’t understand what it is like to experience infertility or childlessness. The people closest to me, who are supposed to love and support me unconditionally have been the most challenging. I have experienced insensitive comments from our immediate families. I have had to overcome old-fashioned ways of thinking about infertility. I have felt pressure to “give my husband an heir to pass on the family farm” or to “just adopt.” I have been told by a sibling to “get over it,” that I could “try again,” or that I can simply love my nieces and nephews and that will be enough to fulfil my longing for motherhood. I could go on. Our families have not shown the level of empathy, respect, and connection that my husband and I craved during the years of my infertility and as we moved into childlessness. This has been an area of opportunity for me to advocate and educate the people closest to us.
I wonder has it impacted relationships with those around you, in the past and to this present day?
I learned how to set boundaries throughout my infertility and into childlessness. I created boundaries around the information I would and would not share about my fertility treatments, my attendance at events such as baby showers and first birthday parties, and what sorts of conversations I would engage in.
As our friends started having children in rapid succession, I felt subtle shifts in our relationships. Sometimes it was me pulling away because I was locked in my grief. Other times, it felt like our friends’ lives were so different from ours. We were not interested in daycare, minivans, babies, toddlers, and everything that comes with that stage of life. Our miles stones and proud moments looked differently and it was hard to share our lives with people who didn’t understand our experience.
Connection has been so important throughout my infertility and as I embraced childlessness.
My relationship with my sister has been strengthened as a result of my infertility. Her selflessness in donating eggs and offering comfort when I was at my lowest point has created an unbreakable bond between us.
Do you feel not having children has impacted the way you view your body?
I believed that my body was broken. I hated my body because it was failing to conceive as women have for thousands of years. It felt so unfair. Physically, fertility treatments had left my body puffy and heavy. I had gained forty pounds over the course of 7 years of fertility treatments through emotional eating. I lost all connection to my body. I lost sight of all the things that my body could do. Instead, I focussed on everything that was lacking. I had to learn to love my body again.
You said there you were 33 when you had your hysterectomy, which is young, I wonder are you comfortable in talking about your experience of menopause?
I had a total hysterectomy which means my body is no longer capable of producing hormones like Oestrogen. My doctor prescribed an Oestrogen patch to replace my natural hormones. I had severe physical symptoms after my hysterectomy even with hormone replacement.
The first year after my hysterectomy, I thought I was dying. I felt as though I was burning from the inside out. I felt an intense burning sensation throughout my entire body, I was hot and sweaty, and I had a rash all over my body. My doctors believed that I was fine because all my tests came back “normal.” My doctors did not believe that my symptoms could be as severe as I reported or that they could be linked to my recent hysterectomy or hormone levels because I had been prescribed hormone replacements.
I had to advocate for myself and demanded a referral back to my gynaecologist who finally listened to my concerns. She prescribed an Oestrogen cream as well as the patch. The combination gave me some relief from my symptoms.
Let me just check in, you’re working the whole time throughout this.
Yes, I was working full time as an elementary school teacher at this time. I was also helping my husband to care for our cattle, taking care of our accounting for the ranch, and commuting two hours back and forth to work each day.
The reason I wanted to double-check is so when people read this, they really understand it’s not you just down tools and you’re just dealing with your health, you have to get on with normal life.
I spent 20 years, from age 13-33 managing my intense pain due to endometriosis. I couldn’t stay in bed or stay at home for all those years. I took countless days off work to travel for fertility treatments and surgeries or due to my physical pain. There comes a point where you can’t take any more time off work, you have to find a way to get on with your life even with the pain.
Can you share some of the things that you’ve done to kind of really start to love your body and trust in it again?
My sister convinced me to start moving my body a little bit every day. I did not want to at first but then as I started to get into it, it really improved my mood and my mental health. The more I exercised, the stronger I felt. I realized I can run, I can lift weights, I can do all these things. I started to realize how strong my body was and to focus on the things I could do, because for so long I focused on the things that I couldn’t do and how I felt broken.
What has been the most challenging part of your experience of not having children?
The hardest part for me, has been learning to forgive myself for my infertility and to come to terms with the fact that my infertility was not my fault. Once I learned to give myself grace and forgiveness, I had to learn to let go of my dream of motherhood. That was so hard because I had clung fiercely to that dream for so many years. I had to let go to give myself the space and freedom to dream new dreams and to find new passions for my life.
As well as the challenges you have experienced, I wonder can you share any positive aspects?
Infertility has forced me to challenge my traditional world view of the role of women and motherhood in my life. It also forced me to explore new talents, passions, and hobbies. I learned that I love to write. Writing has been a powerful healing tool for me. I wrote my book, Baby Rollercoaster: The Unspoken Secret Sorrow of Infertility as a way to process my grief. It was an opportunity for me to turn some of my pain into purpose. I want other women to know that they are not alone, that we are connected, and that there IS life after infertility. The responses and connections I have had from women who have read my book are truly special. I am so grateful to this amazing community of women for giving me support, encouragement, and connection.
If you could change one thing about how not having children is viewed, what would you wish to change?
I wish that people would understand two things. First, that infertility or childlessness is not something that I can simply get over, shake off, or forget. I will always grieve the children that I lost and the life that I dreamed I would have. I learned to grow around my grief, however, my infertility will always be part of me. It has to be. It has shaped who I am and how I see the world. Second, I wish people would know that I might be childless, but that does not mean that I am sad, bitter, hate children/families, angry, jealous, all the time. There is life after infertility.
Anotherhood is about connecting women with shared experiences, I wonder can you share anything that you have found that has helped you to embrace your life without children?
There are 3 things that helped me to move forward into childlessness after my hysterectomy.
1. Counselling- Growing up, my family did not engage in any form of counselling or mental health awareness. It was unheard of in our circles. When I was at my lowest point after losing my babies, verging on suicidal, my husband insisted that I speak to a counsellor. So I did. She very likely saved my life. Some things in life are too big to handle on your own and infertility is one of them. Speaking to a counsellor allowed me to see my situation differently and gave me strategies to work through my grief.
2. Exercise- we all know that exercise is part of a healthy life style. I had lost all connection with my body after fertility treatments. Exercise helped me to reconnect with my body.
3. Writing- Telling my story through my book was a huge help. Talking about my experience took some of the power away from my infertility. It was no longer a shameful secret sorrow. I had other women to help me bear my burden and I realized that I wasn’t alone. Knowing that my story was written down, safe, meant that I didn’t have to hold onto it quite so tightly in my heart.
If you could back in time and talk to your younger self what would you say to her, knowing all you know now?
I wish that I could tell myself that undergoing fertility treatment does not guarantee that you would have a baby at the end of that treatment. I wish that I could tell myself that, even if you don’t have a baby, you’ll be okay, you can still have a wonderful life even without children. I wish I could tell myself to listen to my intuition and to advocate harder and stronger for my health care. I wish I could tell myself that infertility was not my fault and to be gentler with my soul.
It sounds like you want to go back and empower her.
Yes, I wish I could tell myself to enforce boundaries and to really listen to my intuition and follow it wholeheartedly.
Are there any podcast/ books that you have found have helped you on your journey?
Of course, Anotherhood has been so powerful in my healing. It is an important space to visit and see amazing women doing really cool things—without motherhood. Reading these stories really opened up new ideas for me to consider. The (Un)Ripe: Learning to Embrace the Childless Life podcast has been impactful in my life as well. There are so many inspiring interviews to listen to and learn from on Jo’s podcast. As far as books go, anything by Brene Brown is fabulous. I read and reread many of her books in months following my hysterectomy. And, my own book, Baby Rollercoaster, has been an important part of my recovery after infertility.
Just wondering is there anything else you would like to add?
I can’t tell you how powerful it’s been, to be able to see on your website and your Instagram other women like me. That has helped me and my healing and embracing my childlessness. Thank you for the work you do!
You can find out more about Janice’s book here.