OCD had been part of Emma’s life for many years, although she just didn’t know it. Like for so many of us, her life-long OCD wasn’t picked up on until early motherhood, after two miscarriages and the birth of a premature baby during a pandemic lockdown.

In Emma’s words, “it awoke the OCD beast.”

This is one mother’s poignant story about the pain of loss, of experiencing depression and an OCD crisis in motherhood, the resulting shame and anger that came with the diagnosis, and the all-too-familiar lengthy and financial barriers encountered when seeking support.

This is also one mother’s touching story about the very real power that radical acceptance, psychoeducation, writing, and community can have on the journey towards recovery and taming the ‘OCD beast’.

This is Emma’s story - of both power and pain, of acceptance and resistance, of isolation and community - and it’s a story that will stay with you for a long time.

Please note, this episode discusses miscarriage, molar pregnancy, the loss of a loved one, suicidal ideation, and termination of pregnancy. Go gently.

Anxiety and depression were a feature of Emma’s history. OCD was there too, but no one picked up on it. It wasn’t until she experienced two miscarriages prior to conceiving her daughter that, in her words, “it awoke the OCD beast”…

“I think it was September 2017, I found out that I was pregnant. I had only been with my partner for about eight months at the time, so it was a bit of a shock.”

“I did want a baby. I really, really did. But it was such a shock that it had happened, that it was really overwhelming.”

“During those first few weeks of pregnancy, I started getting really significant symptoms. So I was extremely nauseous, extremely fatigued. I think I described it as being in the fifth dimension, I just felt so spaced out that I couldn't even think straight while I was at work.”

“I also started bleeding every single day. I had mentioned this to my midwife at the time, and she's like, ‘Don't be silly. You need to stop Googling’. Because I was the Google queen, I googled everything! I know why I did that now. At the time, I had no idea.”

“So what I discovered at my 13-week scan, the baby had actually passed away, which was absolutely devastating. Probably one of the most, I don't know, I think the word ‘catastrophic’ comes to mind because I had spent so much time coming to terms of the fact that I was going to have this baby, and I became quite excited about it.”

“I had no idea, no idea what was going on. My belly was still growing. Everything was tracking the way that it was, to be told that the baby wasn't there. I remember watching the sonographer put the scanning thing on my stomach, and there was nothing there. I knew that there was something seriously wrong. But it wasn't until she said, ‘There's no heartbeat’, that I just absolutely started wailing. I'm sure every person in that entire centre heard me.”

“It was a really devastating loss for me.”

“Three weeks later, I received a phone call that I had an abnormal tissue, and they needed to talk to me about it.”

“I was like, ‘Whoa, I'm not going to wait a couple of days. I need to know what's going on now.’ So one of the nurses called me back and told me that I had had a partial molar pregnancy. I had no idea what a molar pregnancy was. I had never heard of it before.”

“So what had happened is what they initially thought was a missed miscarriage was actually the diseased placenta growing out of control. So for people who don't know what a molar pregnancy is, basically it acts like a tumour, so it can break off and go through the body to the lungs and to the brain. So it has to have chemotherapy to treat it if it gets that far. So it's really important that it gets diagnosed early!”

“When they took my blood a week after I had known that the pregnancy was over, I believe that the pregnancy actually ended at nine weeks and my body had continued to act pregnant. I think it was 178,000 HCG, which is really high for a pregnancy that has ended. So I had to have weekly blood tests to make sure that the HCG level was dropping, not rising or becoming plateaued, because it meant that the tumour was actually starting to grow back.”

“So that was really scary for me because it was like, ‘you could develop cancer, but it probably won't happen, but it could happen.’ And at the time, I became extremely anxious about it every week to the point where I was just out of my mind, do the blood draw, and then the next day, get the results. And that all went on for three months because that's how long it took for the HCG to reach zero. So it was a really stressful time.”

“And it really sent me into a real spiral after that. Yeah, life became very difficult. I became very depressed. I was very sad. I felt really guilty about everything because I thought that I had caused it. So I had all those really negative thoughts.”

“I don't actually remember when I had my second miscarriage. Can't remember now, but I had my second miscarriage… it was just one that didn't take, and it just simply passed. So that was it. It was nothing as traumatic as that first one.”

“It was devastating. It's one of the - well, it is the most horrible thing I've ever been through.”

“I got pregnant with my daughter in December 2019. I was super excited. I took about a billion pregnancy tests, obsessively looking at them. My partner's like, ‘stop spending money on them. It's too much.’ But yeah, I was really super excited.”

“But then the anxiety happened pretty quickly. I started to become quite nervous about it. I was always checking my underwear to see if I was bleeding. I was really concerned about getting into ultrasounds to check that there wasn't any evidence of a molar pregnancy. It was really, really quite intense.”

“I had a friend who had actually passed away maybe a year beforehand… she unfortunately didn't make it, but her unborn child did. So that was also something I was terrified of, something like that happening to me and then, subsequently, me, having a baby, not being able to see it. And it was really, really sad, and that really affected me quite a lot as well. I still think about her a lot. So there were all these little bits and pieces of other experiences that I had bore witness to, and also my own experiences. It made me extremely nervous.”

“Those miscarriages really took away the innocence of pregnancy for me. It wasn't exciting anymore. It wasn't something I was looking forward to. It was like I was dreading, dreading, dreading, dreading every single day that I woke up: ‘Is something going to be wrong? Is something wrong with my baby? I'm really unhappy. I don't know that I should be feeling this way.’”

“I actually went and saw a psychologist about it and said, ‘I'm really miserable. I don't know what's wrong with me.’ And so we talked about a whole lot of things, but it didn't make any difference. I still felt really low.”

“And then, of course, COVID happened in March 2020, so I wasn't able to continue seeing that woman. It was a very tough time because as well as having those feelings of anxiety, I also was stuck at home a lot of the time. And it was really tough. It made me even more isolated. But I felt safe at home, too, because I felt like, I'm not going to see anybody so I'm not going to contract anything. I'm going to be at home safe.”

“And it progressed really well until I got to about 31 weeks when my daughter's movements changed. And I went and spoke to my midwife. My midwife was like, ‘just come into the hospital, have a look.’ And it all checked out fine. She's like, ‘we'll give you a growth scan just in case.’”

“At the growth scan, they discovered that the umbilical dopplers were abnormal. Went back the next week, they were even worse. I was seen by an obstetrician, and they were like, ‘Yeah, baby's in trouble. She's going to have to be born in the next couple of days.’ So I had the steroid injections in my legs to mature her lungs, and she was born at 34 weeks. So I was going through all that anxiety to come to the point where I've been thrust into this environment. There was no natural interaction with my daughter, so that was also very tough.”

“The first time that I saw her, I just bawled my eyes out. It's not the way you want to see your baby for the first time because after the C-section, they took her away from me pretty much immediately to be put into an incubator and on a C-PAP machine because she was born in respiratory distress. So when I went and actually had a good look at her the next day, it was really confronting seeing her with all of the tubes out of her, the IVs, the face mask that a C-PAP has. It takes up pretty much their entire face. And yeah, it was really distressing.”

“She was so tiny. She was even small for her gestational age. She was 1.8 kgs when she was born. So she weighed less than a two-litre bottle of milk. She looked so fragile, and I was so terrified to hold her. In fact, for the first two weeks, I didn't really hold her very much. I was so terrified that if I held her, I would hurt her. So there wasn't a lot of interaction there. I would sit there and admire her in her cot, but I couldn't really bring myself to being confident enough to pick her up.”

“I'd have to wait for a nurse to put her on me. And I'm sure that the nurses were looking at me like, ‘Something wrong with this mother. She's not interacting with this child.’”

“I was so terrified of her to come to harm. I mean, also, when I was holding her, I'd always look at the monitor because she had a heart monitor on, and I'd always look at the oxygen saturation and the heart monitor, and one of the nurses got really annoyed at me and took it away. She's like, ‘Stop looking at it’. She took it away.”

“Then we brought her home, and she was readmitted to hospital briefly for a week because she was aspirating milk and whatnot. But I mean, in terms of long term, they're pretty minor issues. Those first couple of months are really good.”

“But then I noticed myself going into a deep hole. It happened quite slowly at first. I stopped really... I went to a coffee group with my antenatal class, and I went to one, and that was the first and last one I went to. They were like, ‘Oh, we're all going out. We're all going out.’ And I was like, ‘No, no, I'm okay. I'm okay. I'm going to stick back.’ Because I was so worried about her picking up some germs, which was only compounded by the pandemic and the fact that she was prem.”

“So I didn't really want to take her out anywhere, which was believable at the beginning. But as time wore on, it started to... I found myself making a huge amount of excuses so I didn't have to leave the house. I felt really misunderstood at that time. I didn't feel like many people understood what I was going through, or what it was like having a preterm baby.”

“I'd go through these periods of disassociation. So I'd just basically disappear. My partner would talk to me, and I'll just be laying on the couch, and I wouldn't answer him for hours. Not intentionally. It's just that I was so absorbed with my thoughts that I didn't really recognise that he was trying to communicate with me.”

“I became quite angry. I just attributed that because I was sleep-deprived. I had to get up and feed my daughter in the middle of the night for a long time, so I was very tired.”

“I didn't really do any cleaning around the house. I didn't shower, which I thought, again, it was because I was a new mum and I was sleeping in my clothes, which I would never have done prior to having a baby. I shower all the time. I was very clean. I took my appearance very seriously, and all of a sudden, I didn't really care. I would just get up in the same clothes that I was wearing. Sometimes I wouldn't shower for three days, which is disgusting when I think about it now. I didn't have the motivation or the energy to do any of that for myself. My sole focus was on her, and obviously, the thoughts.”

“I had a lot of thoughts around SIDS. So when you're in SCBU (Special Care Baby Unit), they really drill into you that your child is at a high risk of dying of SIDS. And I later bought an Owlet, but for those first eight months, I would wake up in the middle of the night terrified that she wasn't breathing, and I would just sit there and watch her. It became so obsessive. It was over the top. I couldn't relax. I thought, I'm going to wake up and she's not going to be alive. It was just this constant fear that something was going to happen to her. It was a theme that ran right from the beginning of the pregnancy to even now. It's a theme that keeps on coming back up.”

“I wouldn't go out of the house, really. I would stay at home. It felt safer to be at home than anywhere else.”

“There's a lot of times where I felt very, very dark and very alone, especially leading up to that diagnosis. I was out of my mind. I was definitely in crisis. I don't think I could describe it as anything else. I was in absolute crisis.”

“So from there, really, it started really spiralling. So my daughter started walking around about 13 months, which was really exciting. Yeah, she's walking. But then, of course, I noticed that her head was tilted. And I was like, ‘That's a bit weird’. And I mentioned it to my partner, and he's like, ‘Yeah, I didn't notice it. It was a bit strange. She's just figuring out how to walk’. And I was like, ‘Yeah, but what if there's something else going on? And I'm not picking it up? What if I'm missing something?’”

“And of course, so what do I do? I go straight to Google: child's head tilting, and I get all of these pictures of all these poor kids with brain cancer. I remember looking at them, I was eating my dinner. I literally put it down and felt sick to my stomach, and I was like, ‘Oh, my God, there's something seriously wrong with her.’ And so I sat with these horrible intrusive thoughts, which were just relentless. I would just get them all the time, really disturbing thoughts about what she would look like if she was having treatment, her death, her funeral. I'm thinking of all these things like, they're going to happen.”

“It was like I was in this alternate reality that this was going to happen to my daughter. And it got to the point where I couldn't even watch her. So if I put my head down and she was walking around, if I didn't look at her, it meant that I didn't see it. And if I didn't see it, it meant that it wasn't happening. And so I was terrified that I was watching her deteriorate, and I couldn't watch her do that.”

“So I'd constantly take videos. It sounds so crazy saying this now, but in it, it's the most important thing. I'd be taking all these videos of her to make sure that she was walking properly. And it was almost like I was fabricating her doing these things because when I'd look at the video, they wouldn't look as bad as it would look through my own eyes. It was like I was exaggerating how bad it actually was and when it really wasn't that bad at all. It eventually disappeared over time as she learned how to walk more.”

“But what it coincided with was, again, Auckland's big lockdown. For three months, we were in complete lockdown. We couldn't leave the house. During that time, I literally did not pretty much get off the couch, only if I was going to bathroom, cooking dinner, or if I was going to sleep. And I napped a lot. I wasn't very involved in her or anything else.”

“I was so caught up in my thoughts. I was disassociated I'm googling constantly. It was bad because obviously it allowed me to really sink into that self-deprecating hole where I just was so angry at myself because I wasn't doing anything. And I had so many terrible thoughts It was horrible.”

“But what it did allow me to do was actually sit there and actually witness what was actually happening. This whole awareness happened in that time. I saw a post on Instagram about an OCD cycle. I saw that and I was like, ‘Oh, no. Is this what I've got?’”

“So I started studying psychology after my molar pregnancy because I had so much anxiety, I wanted to focus it on something meaningful. So I had a general awareness of those types of mental disorders, and I had an idea of where OCD sat. So I understood what it was, but I didn't know what it actually looked like in a presentation in somebody.”

“It wasn't until the OCD post on Instagram that it all started falling into place.”

“I rang my friend the next morning, my best friend, and I literally was bawling my eyes out, and I was like, ‘I think I've got OCD. I'm doing all of these things. There's something wrong with me, and I'm a terrible mother,’ and I can't even remember what I said.”

“She was like, ‘I need you to go and talk to somebody now’. I was like, ‘I'm not telling anybody about this because this means that I have a legitimate mental illness, and I don't want anybody to know that about me.’”

“Typically, I'm an over-sharer. For the first time in my life, I'm like, ‘I don't want anybody knowing about this. I don't want to talk about it.’”

“So it took a good month for me to actually go and talk to my GP. I explained it to her, and I was like, ‘This is what I'm doing. I study psychology, have an idea of what it's about.’ And she's like, ‘Oh, yeah, you've definitely got OCD.’ I was like, ‘Okay.’ So from there, it was trying to find somebody who specialised in OCD as a therapist to be able to get a diagnosis.”

Until she could find the right psychologist, Emma’s GP provided interim support. “So she offered me to go on some medication, which I've never been on in my entire life. I had this really naïve view about medication: It was just a bandaid over a bullet wound type of thing! And I was dead set against it which is, in hindsight, very silly. And so I decided to give it a go.”

“I had about a quarter of a tablet, and literally, I took it in the morning, and by the evening, I was laying on the couch, and my mind was blank for the first time in, I can't even remember, forever. It was like, when you've got OCD, it's like standing in a room full of thousands of people just constantly chatting. And it's not other people chatting to you. It's like your own thoughts, constantly rushing over. When I took those pills, it was like walking into a room and then closing the door and then just silence. That's how it felt like to me. It was this beautiful, beautiful silence.”

“But they came with side effects, so they didn't really work for me. But for the most part, they were okay.”

”I was put on a different medication, which made me angry. So I went from being super calm, happy to being quite angry within a week. And I was like, ‘okay, these are not working for me’. So I asked to be put on something else. So I did a washout, which was horrible. I have never felt so terrible in my life is when I did that washout. But the washout coincided with the very first beginnings of my pregnancy. So I felt even worse. I've never felt so terrible in my life. Those experiences alone with the side effects of the first one, the side effects of the second one, and the washout would put me off taking them. I just can't handle them.”

“For some people, they work amazingly, and I wish I was one of those people, but I'm not.”

“I also had asked to see a psychiatrist to diagnose me, but everybody was completely booked. I had no chance of getting in until March. At this stage, it was early January, and I was like, ‘this is not working. I need to find someone soon. I can't continue on like this.’”

“I found somebody, a psychologist, who was able to diagnose me, and I got formerly diagnosed in January 2022 and went through a little bit of therapy. If I'm being honest, I haven't really completed any therapy. I started to, and it's not because I didn't want to. Financially, it's really expensive. I would have loved, loved to have done it. I think time constraints. I also found out I was pregnant at the time. So mentally, I was very fatigued. I didn't feel well. I just... The financial thing, I was also moving. So there was all these things happening, so I couldn't really stay doing it.”

“But from what I did learn in that time, it was extremely helpful, extremely helpful, and it set me on the right path.”

“One of the first things that she had actually given me to do, she's like, ‘You need to educate yourself on this.’ It's funny because once you start understanding the mental illness, it makes it so much easier to deal with. I think the most important thing that I took away from it was that it wasn't my fault. I had spent my life blaming myself for the way that I was. It was pointless because it wasn't my fault. And that in itself was a huge weight lifted off my shoulders.”

“A really big turning point for me, which is weird, is I had really low iron, like most pregnant women do. So I started taking the prescribed ferritin, and then I also got some herbal supplement, which had high iron in it, to bring up my levels because they were extremely low. And surprisingly, my OCD thoughts became less and less and less and less as time wore on. And I was like, ‘why is this happening? Why am I feeling so much better mentally? What's going on?’ And I found that iron is really important to the creation of neurotransmitters like dopamine and serotonin and stuff like that. So I found iron really helpful, and that was really the beginning of me starting to feel better.”

“What also helped is I actually moved in with my mum. So I made a decision with my partner that it would be good to move in with my mum because my mental health was so horrible at the time that I really needed to do something.”

“I found that isolation of constantly being on my own at home was really compounding how I was feeling. And of course, I had become so used to being isolated that I didn't really have a social life anymore, that completely disappeared. Prior to having my molar pregnancy, I was super social. I was out all the time. I was partying, I was having fun. And then all of a sudden, I'm just a hermit. I don't want to leave the house. So moving with my mum was a huge part of that. I had extended family members come over, my brother's coming over, my dad would come over. It was just really good.”

“It allowed me not to focus so much on the thoughts. And also my mum works part-time, and so she was always around. So I could go and talk to her if I wanted to talk to her or hang out with her or do something with her. It made it really easy to get out of that funk because I've never been in a situation where I'd been on my own a lot. I'm very social. I like being around people. So when I wasn't able to, it just made everything so much worse.”

“My pregnancy with my son was super hard. I was very, very sick and I was very, very tired. That overtook OCD for a bit because I just felt so awful. I think in those initial stages, I still felt... I feel like in my mind at that time, the damage had already been done with my daughter. I had been so not present with her. I tried so hard to be as present, but I could be places with her and do things, but my mind was always elsewhere. I wasn't actually focused on her.”

“I think that I tried to continue to be present, but obviously, being pregnant and struggling to stay awake most of the time, it was quite tough. I also found out at about, I think, at the 13-week scan that my son was high risk for being Down Syndrome, and that just threw me over the edge… that was really, really scary for me. OCD was at an all-time high on that. I couldn't stop thinking about it. I had to have an amniocentesis.”

“Long story short, it all came back fine. But I was so focused on that again, the repairing of my relationship with my daughter didn't really come until after my son was born.”

“But after my son was born, I was able to start interacting properly with her and spending time with her and became really dedicated to being present with her and doing things with her that she enjoyed, that she had fun with, and taking her places, and throwing her a massive third birthday. Just really being present with her.”

“When you don't have the intrusive thoughts, it makes it much easier to be around her again. I'm much more present and I'm not so worried about taking her out, putting her in kindy and stuff like that, going to dance classes, going to zoos. Just really enjoy doing all those types of things with her.”

Compared to with her daughter, Emma was able to manage the OCD better after having her son. “Very different. When I started having the thoughts, I'm like, ‘Yeah, okay. Maybe, maybe not OCD. I don't really want to engage in these right now.’”

“He had problems of severe reflux and also a cow’s milk protein allergy, so he didn't gain weight very well, and he looked quite sick, so I got quite worried then. But it got worked out, and I didn't really dwell on it.”

“I became a little bit obsessive about his weight gain because I wanted him t o gain weight because he was quite small. I will say that I went out and bought some cheap scales from Kmart just to weigh him so I could keep a track on it. But I wasn't writing it down or anything like that. So it was really different.”

“And I didn't let myself get into those places where the thoughts started running away with me. I was able to bring myself back because of the awareness of what those thoughts looked like.”

“I think one of the things when you first get diagnosed with OCD is prying away the OCD from your identity. And so it's about finding what your identity is again. And I think it takes a bit of time, but by the time my son was born, I had really worked that out.”

“I turned to my authentic self. Yeah, I was definitely more authentic with my son than I was with my daughter. I mean, I tried really hard, but I didn't quite... Not to the same ease that I have with him.”

“And the thing is, the saddest thing is, I'm probably way more present with him than I ever was with my daughter. And that makes me really sad because her experience of me was a lot different to the way my son experiences me. And that is extremely hard to think about. Yeah, I have a lot of regret about that.”

A big part of Emma’s journey involved coming to terms with the OCD diagnosis and the way she saw herself. She describes receiving the diagnosis as “devastating.”

“When you start realising, all the dominoes start falling into place… It's actually extremely emotional. It's embarrassing - I'm speaking for myself here - super embarrassing. I stigmatised myself horrendously about the whole thing. I was so ashamed that I had this mental illness. How would I tell people? I'm so weird... Far out. I was so hard on myself about it. I was so ashamed. I was so ashamed.”

“I was really angry. I was angry that I had spent my entire life being like this. How would my life have been if I knew what was going on with me earlier? How much better would my life have been? How much more would I have lived my life instead of living it through fear? And that's something that I'm still not totally accepting of. It's like I wasted so much of my life.”

It wasn’t until Emma started writing and connecting with the OCD community on Instagram that she began to feel less ashamed.

“Writing has always been really cathartic for me. Prior to having children, I was in an abusive relationship, and I saw a counsellor, and she suggested to write a journal. I knew that if I wrote in a journal, I'd write it down for a day, and then I'd forget about it and collect dust. I made a decision to start writing a blog about my life being single and in my early 30s, and I really enjoyed it. It really gave me extreme clarity, and I was so much happier because of it.”

“When I put it out into writing and just let it sail, I just felt so good. It was like it was out of my mind, and I didn't have to think about it anymore. I never really thought of myself as a writer. I just enjoyed talking, really.”

“When it came to OCD, I sat on the OCD diagnosis for a few months, and I was so embarrassed about it. I was like, ‘You know what? I need to find other people who've got OCD’ because I know nobody. Nobody I know has this disorder, and I feel so alone. I found the community on Instagram, and I was like, well, maybe I should start a page and then if I start a page, maybe I'll stop feeling so embarrassed about my diagnosis.”

“I really created it, so I'd stop feeling embarrassed about the fact that I had OCD, as well as being able to share my thoughts around it. And obviously, as time has worn on and I've got better and have more a circumspect view on everything, I started my blog because I just wanted to start writing again. And yeah, my second blog was about my experience having OCD postnatally.”

“I have been able to let go of it. It took a good year. It took a year for me to stop feeling embarrassed about it. I suppose in some respects, I still feel a little bit of shame about it. But I think being in a community, the OCD community on Instagram is incredible. I mean, these people, amazing. So many resources, so many really lovely people just reaching out to me to see if I'm okay. There's no agenda there. They just want to talk to you.”

“I found that really helpful because it made me not feel so alone in the way that I was feeling. And of course, it helped me learn so much more about OCD and how it works. And as a result, I started getting better because I could talk to other people about it.”

To end our talk, I shared a powerful post that Emma wrote on her Instagram account @newly_OCD which deserves space here too. In Emma’s words:

“OCD ruled my life for over 25 years. After a year of hard work, increased awareness and determination, my OCD is now a whisper and no longer a shout. OCD is a part of me. I accept its presence, but I will never again accept its hold over me.”

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