Why did you get involved in infertility advocacy?
My journey in advocacy started exactly 4 years ago. It wasn’t a slow process but rather a sudden moment that switched the advocacy switch on. We had just come out of our second failed IVF cycle. One of those cycles that didn’t even produce embryos to transfer and I was so tired. Physically, emotionally and spiritually exhausted from fighting to bring a life into the world. I decided to look through the Discovery brochure to see if there was anything that would help us pay for the next treatment cycle and there it was, infertility, a PMB disease, listed alongside acts of terrorism. That was my moment of realising that someone had to speak for infertility.
How did you start the process?
I started with support from the infertility community and family right from the beginning and especially a very loyal sister who is an attorney and knew the Medical Schemes Act well. She said she would help me if I do all the research, and so began my second job which has continued up until now and still holds me passionately. From the beginning my sister encouraged me to start a NPC to make the voice for infertility even stronger. It took 3 years for that to finally happen.
Have you had support along the way?
I have always had support from fellow infertiles and I have come into contact with so many people at different stages of their journey. With IFAASA we have a unified support for each other that challenges us and helps us move forward.
Did you ever worry about losing your Discovery membership because of fighting for this cause?
In the beginning it certainly did cross my mind. But as I empowered myself with more knowledge the fear disappeared. I must just say though that I am fully prepared to risk my membership for this cause, that is how much I believe in it.
What is it that makes you want to advocate for infertility after so many years?
I often remember how I felt when I was in the trenches of treatment and just not knowing if we would have a baby or not. And I did not forget about that feeling as soon as I held my baby in my arms. As I started to understand that infertility is a disease the veil of shame started to lift. I used to feel like I was 1 in 60 not 1 in 6. It is only through understanding and reaching out that we will truly make this an easier journey for those following in our footsteps.
How do you find the time to advocate?
It is a challenge sometimes finding time for my family, paying job and IFAASA. But the encouragement and victories for IFAASA are always coming in and I never regret reaching out and growing awareness around infertility.
Were you always comfortable speaking about your infertility?
No, definitely not. For years I didn’t speak about my infertility to anyone. Most of my family and friends didn’t know I was infertile. Of course when you experience recurrent pregnancy loss it becomes more difficult to keep your diagnosis a secret. I stalked on-line support forums but never posted. It was a self inflicted shame that made me an outcast in my own life and it diminished me. It was such a relief to start speaking about our diagnosis of infertility. There was so much support from people that didn’t have any idea how reproduction works but were willing to try and understand and walk with me. Through IFAASA I hope no one has to suffer by themselves.
Where do you see IFAASA going in the future?
I see IFAASA growing its support base and most importantly reaching out to more infertiles all over the country. It is also important for us to incorporate and understand the effect infertility has on different cultures in our country. For example the issue of donor conception can be an extremely difficult process for some cultures to accept and might never be accepted by some family members.
What is your favourite part of being involved in IFAASA?
The feedback we get from individuals who have never had a community to speak about their diagnosis is my favourite part. Feedback after our seminars in May were mostly along the lines of: I am so grateful to be able to speak about infertility with people that understand.
As the founder, how did you build your IFAASA team?
It started in June 2013 when I needed support at the Discovery AGM. I was prepared to submit a motion at the AGM to lobby for acceptable cover but I could not deliver the motion as I was not a main member. So I sent out a request on an on-line support forum for assistance and immediately received emails from people diagnosed with infertility offering assistance. Saskia Williams presented the motion and I will always be grateful for her strength and courage on that day. Shortly after that I spoke to a few people about the concept of forming a NPC and it wasn’t long that our structure was finalised and we were officially registered. From then we have been moving forward and growing very fast, which is testimony to the fact that South Africa was ready for an association such as IFAASA. We often receive emails from people wanting to be involved in IFAASA and try and incorporate relevant skills into our structure.