At the best of times, having a baby is an enormous transition to undertake. When coupled with perinatal obsessive compulsive disorder (OCD), an often misdiagnosed and misunderstood condition, having a baby can become a dark, traumatic and crippling experience. Perinatal OCD is characterised by recurrent thoughts that some sort of harm and/or contamination will happen to your baby – thoughts which many mothers do not want to admit to having. These are followed by intense anxiety and compulsions such as obsessive hand-washing or checking on the baby’s welfare. Perinatal OCD is thought to affect up to 1% of women during pregnancy and around 3% in the following year. This amounts to 20,000 UK mothers per year, however given that many mothers are too ashamed to seek help, these numbers may be much higher.
Cath, perinatal OCD campaigner, 35, has had OCD symptoms since the age of four, which were heavily exacerbated by her pregnancy. "I’ve had seven miscarriages so I get really anxious anyway when I’m pregnant and this gets blown way out of proportion because of the OCD," she says. For those who have had no symptoms before, the OCD is triggered by the pregnancy and as such can go undiagnosed for months.
This was the case for Ana Clare Rouds, mother of two and author of Dancing on the Edge of Sanity, a memoir about her experience of perinatal OCD. She told Refinery29, "I didn’t even know I had perinatal OCD, I thought I had postnatal depression, so one of the things that I became obsessed with was my actual condition- what did I have?"
Sufferers of perinatal OCD often confuse their disorder with postpartum psychosis, confusing the intrusive thoughts characteristic of OCD with hallucinations or delusions characteristic of psychosis. Ana shares with me one of the most disturbing thoughts she would have. "We had this, like a wooden stove we used to heat our home and I had this fear that my son would drop into the fire. It wasn’t at all that I wanted to drop him into the fire, I just had this fear, that if I was standing too close, he might fall into the fire."
While such an image is undoubtedly traumatic for mothers, research has shown that intrusive thoughts regarding deliberate or accidental harm are relatively normal, occurring in 80% of the general population and even more commonly in new parents. Being aware of the fragility of your child and the possibilities of harm is arguably just an evolutionary necessity. Dr Fiona Challacombe, an expert in perinatal OCD, emphasises that, "Lots of people have thoughts of cot death and these sorts of things at that time and that’s clearly what you should be thinking at that point."
So if these thoughts are normal, what makes them so disruptive? The consensus among experts is that it’s not the thoughts themselves, but rather the negative interpretation of the thoughts that characterise OCD. Dr Adam Radomsky, a consultant for Maternal OCD, told Refinery29, "If you decide that those thoughts make you a danger or make you bad or evil or if you’re worried they might mean that you’re crazy - that’s what will really put you at risk." This was clearly the case with Ana who says that as soon as she had any distressing thoughts of harm, instead of brushing them off, she thought, "Oh my goodness I must have psychosis, I must want to hurt this baby."
Cath has had similar intrusive thoughts but doesn’t like to go into them publicly. She did say that, "One of the examples commonly given is of a woman who hides all the knives in her house. That’s something that I did; I had my husband hide them so I didn’t know where they were. I was worried about an accident happening or going mad or losing control." Cath says that some women are so afraid they are going to contaminate their baby that it gets to the point that their hands are raw from washing, or they stop eating altogether.
That fact that women with perinatal OCD go to such extremes to stop the harm they fear happening to their baby is one of many indicators that they do not actually wish to harm their baby. In fact, there are no recorded cases of people with perinatal OCD acting on their thoughts of harm. Just as it tends to be very religious people that fear they'll be blasphemous, with perinatal OCD it tends to be mothers who fear that they’ll hurt their children. "You fear the worst possible thing that could happen for you," says Cath. "The most opposite thing to who you actually are." This is presumably why thoughts of harm are so difficult for mothers to disclose.
The shame of disclosing these difficulties is often compounded by fears of being misjudged by professionals as a harmful parent, which is exactly what happened to Ana. "I was treated like I had the intention of burning my baby, and that’s freaky in your mind. If you confide to doctors that this is what you’re afraid of, and their response is, ‘yeah, you can’t be near your son, you are a threat to your baby’, that just results in such a mind game." Ana was even committed to a psychiatric institution under the advice of a crisis councillor who had met with her for a brief 15 minutes. Although she was only there for 24 hours, she says, "I thought of it as jail, I just knew I needed to leave and be with my son. It was the most difficult time of my life for sure."
This lack of knowledge and understanding around perinatal OCD is scarily widespread. When I asked Cath if she'd had any negative responses from healthcare professionals, she just laughs "oh yeah", and tells me story after story. "I was suicidal at 26 weeks and my midwife wrote ‘emotionally well’ in my notes, even though she’d been told about it. She didn’t want to understand." As shocking as these reactions are, they’re less surprising when you consider the latest NSPCC report on perinatal mental health, which shows that 29% of midwives said they had received no content on mental health in their training, whilst 42% of GPs said they lacked specialist knowledge for people with severe mental illnesses.
Both Cath and Ana eventually found support and met with specialists who understood. A psychiatrist immediately took Ana out of the institution, and Cath says an ante-natal clinic in Birmingham were "absolutely amazing." Cognitive behavioural therapy (CBT), a talking therapy aimed at eradicating unhelpful behaviours and ideas, is the most common treatment used for perinatal OCD. It is thought to have about a 67% success rate, helping at least three quarters of sufferers. Dr Radomsky says, "Unfortunately there are some people who don’t respond, but a lot of people with the right help can see their problem vanish with CBT. For that reason, if you’re the kind of person who’s tried a CBT therapist and it hasn’t quite worked for you, I always recommend trying another." Both Cath and Ana said that it was immensely helpful, with Cath saying, "It's absolutely life-changing. It gave me back so much, I think its probably the reason that my marriage is still intact."
An element of the CBT that Cath found particularly useful was exposure and response prevention, a treatment that exposes subjects to their fears so that they discontinue their escape response. Cath explains: "Say if I had a fear that if I was with my kids, I might go mad and lose control and stab them. I had to write it down until my anxiety response was reduced. The therapist knew I wouldn’t do it, the psychiatrist knew I wouldn’t do it, and deep down I knew I wouldn’t do it – but the fear was ruining my life."
Although not a treatment as such, Dr Challacombe highlights that peer support can be very useful, and speaking to others who have been through the same can be incredibly comforting. Cath emphasises that, "Women aren’t alone, you can feel as isolated as you feel when you’ve got a mental illness but if you don’t feel able to speak to a doctor first, reach out to all the other women out there. There are communities on Twitter and Facebook with other women who have been through this already. Look for advocacy, there are women talking about it."
Although perinatal OCD is slowly getting more attention, with organisations like Maternal OCD and campaigners like Cath doing what they can to eradicate the stigma, much more needs to be done to increase knowledge and awareness around the problem, not only in public spheres but also in healthcare communities. Dr Radomsky adds that he’d love to see it become part of parental education too, because becoming a parent can be about more than just changing a nappy.