How Patient Organizations support aspiring couples


Christina presented her story at the Organon stand in Copenhagen at the ESHRE 2023. You can read the full text here - and sorry for the mistakes that will definitely exist in this article 😉

Hello my name is Christina Fadler, I am the chairwoman of the association Die Fruchtbar in Austria. The name is a play with the words fertile and fruit bar, for those of you who do not speak German.  We are a support group and an association focusing on trying to conceive and raising awareness for infertility.

It all started in 2020, when my first fresh transfer after my first IVF failed. I was desperate and miserable. At that moment, we had been trying to conceive for 2 years already – with four inseminations resulting in nothing more than cost piling up and me feeling awful. I had already been in doubt before starting IVF and I felt like I was the only one who wouldn’t get pregnant right away. Cause no one talked about IVF or infertility, although the clinics seemed busy and the waiting rooms full of desperate couples. I was annoyed by all the frustrating visits at the clinic and at several doctors who could never tell me why I wasn’t pregnant yet. But the more I did my research online and when I started talking about my experience of infertility, I realized: I wasn’t the only one. So I felt someone should talk about and started blogging about my experience in August 2020. Prior to my blog I had been in contact with a journalist from a daily newspaper and she promised to help and publish information about my blog. Cause she had been through IVF herself, for seven years and in the end, she had adopted two children.

So in September 2020, my first (of many) articles was published in the online version of the daily newspaper Der Standard. I chose to write under a pseudonym, since it felt like a safer way to handle the topic. Especially, due to my job – I didn’t want people to constantly check out the size of my belly.

The intention of the article was also, to start a network with guest contributions for the blog and a support group. I felt others should talk about their journey, to make themselves and the others feel understood. The support group I knew was basically organized by the clinic and wasn’t patient driven. After the article was published in September 2020, I received so many positive messages, I was completely overwhelmed.

A little later, in autumn 2020 I received a message as follows:

Since I read your article in the Standard, I keep thinking about writing to you. I recognized myself so much. For quite a while I thought I could only get in touch with you if I could tell you about a success story of my pregnancy.... but that's not the point. I think it's great that you're campaigning for a support group in Austria, it's nice to have a connection to others who suffer infertility in the same country. In Germany there are all kinds of groups, but it's just not the same.

I didn’t talk about our “problem” at the beginning, no one knew about our desire to have children. Meanwhile, we have told a few friends, they know what happened. But, especially in times like these (she is speaking about the pandemic), you don't want to contaminate the sparse time you still spend with friends with this topic. I only talk about it when asked. Happens rather rarely. Besides, no outsider understands how you feel in such a situation. I still remember my former insensitive self, I would not have understood it before. That's why I dare to look quite shyly to see if there is an easier exchange with like-minded people. Unfortunately I had to go a very hard way and I can tell you a lot about habitual abortions. I had a uteroscopy in September as part of the workup. At the hospital, my bedmate had just had her first miscarriage. As I had already been in this situation before, I was able to give her some answers – and it was great to see that the whole thing was also good for something. I could help her a little.”

Sarah's email

I am reading this message to you because it gives a good example, how patient support groups work. Let’s call this woman Sarah. We started a regular e-mail and Whatsapp exchange. It turned out she has had several miscarriages and felt she shouldn’t join the support group cause she would make the others feel bad and afraid of miscarriages.

But the good thing about our support group is: It makes you feel understood and not alone. Every month I keep hearing similar stories, but each patient has their individual infertility journey. Not one of their stories are the same. And you realize: there are others out there who just feel like me. Who suffer monthly when they are on their period. Who avoid pregnant women. Who avoid baby parties and hate the baby pictures being shown in the clinics. They only tell you how incapable you are of getting pregnant and remind you of your own failure. A female body, unable to produce a child and become a mother.

Sarah finally joined our online support group and became a regular and helpful member to all other women who suffered miscarriages. When they had finally decided to adopt to avoid another miscarriage, she was already pregnant again. And so afraid of another disappointment and heartbreak. But no one knows why, this time she had her baby daughter after 9 months of pregnancy.

5 months after Sarah got pregnant, I had my first positive pregnancy test. I still remember how thrilled and happy she was when I immediately told her – and I still have that picture of her on my phone. We finally met in person when we were both pregnant in summer 2021.

Our support group basically started in September 2020 and my pregnancy was by the end of June 2021. But within this short period of time, it was my anker and it felt like the best thing that could ever happen to me in this terrible situation. I made friends. I made other women and couples feel better. I gave medical advice. The blog gave women the opportunity to tell their story and be heard.

People keep wondering why I still engage in the group and why I keep fighting for this topic. For one: trying to conceive is a wound that stays forever. Even when you have a child. The pain never really goes away. But most of all: It is about supporting patients. Not all stories end like Sarah's story or mine. There are women and men who will remain childless – or will not have a biological child. And we need to support them as well. And we need to improve patient’s treatments, the law and public awareness of infertility. One of the main reasons why we started the association, was because we wanted to give infertility in Austria faces and a voice. Cause as patients, we need each others support and we need to speak up and tell our stories.

Back in spring 2021, I thought: hey, maybe let’s have a look if the EU does something on infertility. And all of a sudden, I landed on the website of Fertility Europe. I was thrilled: I had never heard of the term patient organization. Could it be that there were lots of organizations dealing with infertility in Europe? Why don’t we have one in Austria? I couldn’t believe it when I started studying the different websites with all their activities. I immediately sent an e-mail to Fertility Europe and the seed was planted: we should become this patient organization in Austria! I couldn’t get the idea out of my head.

Six months later, we officially founded our organization. In February 2022, our website went online. One month later, my son was born. In September 2022, my first article with my real name was published to introduce our association. And here I am now, standing in front of you. We have a little budget coming from the City of Vienna and we’re trying to get another public projects fund for support groups. We have access to rooms for events for free. We have started lobbying with Parliament and the politicial Parties in Austria and our support group has been featured in different media. There’s still lots of work ahead of us, but we have already achieved a lot. And most importantly: we continuously support patients like Sarah. And patients like Sarah and me will support other patients going through suffered miscarriages or IVF.

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