I am 32-year-old female scientist pursuing an academic career in neuroscience. I have won a prestigious fellowship and recently my dream of publishing as a first author in Nature has become true. I am happily married, have loving friends, a loving family and I am fit and healthy. Some of my friends are envious of my happy and successful life. However, there is something about me that most people don’t know – I am suffering from infertility.
Most of the times, I feel miserable, and I am completely broken inside. Why? Because every little piece of my mind wants to have a baby but my body refuses and my brain does not accept that. I feel lonely and nobody does understand my fears. Of course, my friends and family are supportive and try to help and comfort me, but it feels like nobody really understands how I really feel. Probably because I sometimes don’t understand my feelings either.
I have Polycystic Ovarian Syndrome (PCOS), which results in the absence or severe irregularity of ovulation and periods. This is of course difficult for having a baby. The diagnosis was shocking for me, as I really do not fall into the typical pattern, as I am not overweight at all, I live a healthy life and I do not have other typical characteristics of PCOS. For 1.5 years by now, I am getting drugs that should make me ovulate – that sounds quite simple, but as a neuroscientist, I know that biology never is. The first drug I had to take for about 10 months did nothing but making me depressive (without ovulation), but I only realized that after I stopped taking it. The doctors then decided to give me another drug, which is a hormone that I need to inject on a daily basis in the first half of my cycle which is followed by what doctors call “trying naturally” – believe me, there is nothing natural about this any more… From the medical point, this drug works more or less well, but still did not get me closer to my dream. The downside of this treatment: I need to go to the clinic twice a week for an intravaginal scan and a blood test. Can anyone imagine, going to a clinic twice a week for a blood test since October last year? My veins can hardly recover from all the bruises and I look like a heroin addict. But the worst things are the scans, which are essentially similar to a smear where a stick is used to take an ultrasound of your internal reproductive organs. These are done by different doctors (mostly males) almost every time. The constant doctor visits make it almost impossible for me to travel anywhere, no matter if for leisure or work, which is currently a real problem for me. I am not prudish, but I have lost my dignity somewhere on a gynaecological examination chair.
However, exposing your most intimate parts (that even I have never seen) to dozens of people, sharing your sex life and other things you usually do not talk about has become normal for me and this is why I have the courage to share my story.
The medical facts are easy for me. Especially as a scientist, I am somehow detached and in my eyes, conceiving is nothing but a biochemical process that needs to happen in my body. However, the last 2.5 years have left scars on my body, on my heart and on my soul. Scars that I cannot even describe and that have changed me as a person and I am truly scared that the scars on my heart (unlike the ones on my body) will remain forever and I will never be able to be the person I used to be.
I always thought that I am sad, but I just started to realize that it is not really sadness I am feeling but more a feeling of numbness and powerlessness. I can hardly remember when I really laughed for the last time. I don’t mean moving my facial muscles to create a happy look, but truly with my heart. Instead, I am crying very often, sometimes every day. I am feeling so powerless because there is nothing I can do and at the same time I feel useless and unworthy being called a women. Are women not biologically defined as women because of the ability to produce offspring? I know that this infertility it is not my fault, but I hate myself and I hate my body for not functioning and sometimes I can hardly look in the mirror. What did I do that this happens to me? Why can I not be normal? I always thought that infertility affects only people who do not take care of themselves or who wait until their mid 40es because they want to enjoy life. I was wrong. My husband tries to help me and to make me love myself, but it is difficult for him seeing me like this, and I am scared that our marriage will suffer. Indeed, I am not going through this alone, also he wants to have a baby and he suffers too, but I don’t think that men (at least the ones that don’t have fertility issues) do feel the same pain than we do, because they do not need to go through treatment.
On bad days, I do not want to and I am not able to do anything, I sit on the floor staring at something with occasional sobs and tears. This is the feeling of numbness I mentioned before; I think I am too empty to even be sad. People tell me to distract myself and to do something nice, but honestly, have you realized how many pregnant women are walking around and how many couples are having babies? I went to the beach recently and had to go home again – not a good distraction. The only distraction I am getting is work. I do work 11-12hrs a day and I work weekends. I like it because being caught in a complicated experiment in the lab is the only time I can forget and where I am happy. One reason for this is that I am good at what I am doing and hence I don’t have the constant feeling of being a failure. Working in the weekend also is a good excuse not to do things that usually families are doing. Do I even deserve doing nice things for my own pleasure even though I don’t have a family? Of course I do, but my damaged soul tells me that I do not and that I need to wait until I deserve to enjoy these things. I sometimes try explaining this to friends, but without being mean this is not very helpful, because they cannot understand how I feel – how should they? Their well-meant suggestions to just relax and stop thinking about it feel so deeply wrong and their cheering words that it will happen soon and that I have so much time left make me feel even worse. This is the very last thing I want to hear, because the bitter truth is that nobody knows if it will ever happen. Kind words will not change that truth.
Sometimes I wake up from a dream that my whole family and friends are making fun of me because I don’t have a child yet and some of them even blame me for being so egoistic that I put my career first instead of having a family. Luckily, this is only a dream, but I guess that in reality some people do think that. In other dreams, I am having a baby or I am pregnant. In both occasions when I wake up, I know that I will be another bad and tearful day ahead.
I am scared of my future. What happens if no treatment will work and I will remain childless? I know that there is life without kids and this is not what makes us the person who we are, but at the moment I have no idea how this is supposed to look like for me. It is a big black hole and I am too scared to think about it and it also hurts too much. My husband is starting to talk about our future and buying a house – I don’t want to buy a house, because I feel that I do not deserve it without having kids. Again, I know that this is stupid, but I know that I could not stand the emptiness of the rooms. I feel guilty, because my husband does not deserve to have such a person like me on his side, I am not the person that he married. I want him to be happy and not surrounded by tears and sadness. And I want him to be a dad what without me he could be. Therefore, I am often playing the happy game, although he clearly feels that it is mostly a game. I am also playing this game at work. I need to, because I need to function on a daily basis, need to get papers published and proceed with my career, whilst I am broken inside… And academic careers do not have space for that.
The absolutely worst days are when my period arrives (now that I have one due to medication). Although I don’t have much hope left that I will be pregnant at some point, it always hits me like a hammer. Our periods don’t have any mercy and they usually come in the most unsuitable situations when you cannot sit somewhere and have a good cry but have to give input in an important meeting or give a seminar, which you need to do despite what just happens down there. But it is not so much the fact that another cycle failed makes me feel miserable, it is much more knowing that I have to repeatedly go through all of this again and again, falling deeper into that spiral of physical and mental pain. Our mind wants to protect us form being hurt, but our heart continues to hope, otherwise we would not go through this. Sometimes I wished I’d rather have a terminal disease, because then I would know that all the pain and suffering would at least be over at some point, but my infertility might go on forever.
Sometimes I am asking myself: why I am doing that? Why can I not just stop every treatment and live a happy life with the decision not to have a child? Because I cant. I suppose it is our evolutionary instinct to reproduce and at least for the moment there is nothing I can do about. I just need to learn to live with this pain, because there is nothing I can do besides keeping that tiny glimmer of hope that it will eventually work and hope that time will heal these wounds.
I also want to mention that I am having happy days. Sometimes, I can forget about everything and be a happy young person that enjoys life and her marriage. I am proud of my achievements and I know that I do not need a baby to be happy. Then I also understand that my sadness is partly coming from the hormones I am taking and that I cannot control that. All women know that hormones are an a**.
Most people that are blessed with fertility don’t know anything about our fears and pain, because this topic is so intimate that people feel too ashamed to even tell their families and friends. But why? Why do people openly talk about having cancer and other diseases but not about infertility? I guess it comes from history. So many women on this planet still think they are “unclean” when they are menstruating, but this needs to change. We women should be proud of our bodies and our reproductive organs – not matter if functional or not – are nothing to be ashamed of. Michelle Obama started to raise the awareness of this problem when she wrote about miscarriages and in-vitro fertilization, and I wish that many other women and couples do follow her. I am sharing my story because I want to support other people, to let them know that their pain, fears and thoughts are valid and nothing to be ashamed of. What we need is the awareness of our society to get the support that we need to find a way to live a normal life.