Postpartum OCD is the most misunderstood perinatal disorder. Here's what to know
Two mothers opened up to Yahoo Canada about their mental health after giving birth.
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Leading up to the birth of her first child, Carley Fortune did her homework.
The Canadian journalist and writer had been working in women’s media for years, making her something of an expert in women's issues. Prior to giving birth, she'd taken a prenatal course and attended an information session about what to expect after giving birth.
Fortune consumed as much information as she could to prepare herself for the postpartum phase, and she felt ready.
Shortly after her son was born, she began having intrusive thoughts — images about harming her baby.
"I have a hard time talking about the stuff that went through my head because it's really graphic and disturbing," Fortune admitted.
She was terrified to be alone with her child.
Fortune believed she was experiencing postpartum psychosis, and she feared she would be institutionalized if she told anyone what was going on in her head.
Instead, she was suffering from postpartum obsessive-compulsive disorder (PPOCD), the most misunderstood and misdiagnosed perinatal disorder.
The new mom got sick of struggling and opened up to her husband, and later her doctor, which lead to a PPOCD diagnosis.
"I had never heard of it before," she told Yahoo Canada, adding the diagnosis allowed her to get the help she needed.
What is postpartum OCD?
Like other postpartum disorders, including postpartum anxiety (PPA), postpartum depression (PPD) and postpartum psychosis, PPOCD can start during pregnancy or after delivery, according to social worker and psychotherapist Megan Rafuse. Rafuse is also the co-founder of virtual therapy provider Shift Collab.
It's an anxiety disorder that can affect anyone in a parenting role following the birth or adoption of an infant, she said — not just the person giving birth.
PPOCD is marked by intrusive thoughts and images typically focused on perceived dangers to the baby’s well-being. Those images can trigger compulsions that impair the parent's ability to bond with their new baby, Rafuse explained.
Compulsions may look like:
Locking up knives or potential weapons in the home
Repeatedly checking on the baby as they sleep
Excessively asking others for reassurance that the baby is not being harmed or abused
It can also be avoiding activities such as feeding, changing diapers, or bathing out of fear of accidentally or intentionally harming, sexually abusing or poisoning the baby.
A recent study in the Journal of Clinical Psychiatry found the amount of women who experience postpartum obsessions or compulsion to be nearly 17 per cent — much higher than previously believed.
"The reason for this disparity in awareness, support and treatment is due to multiple factors, including a lack of effective and specialized screening for PPOCD," Rafuse said.
There is also a lack of awareness around the condition among parents.
'Racked with guilt'
Like Fortune, Anne Thériault did her research before having a child.
"I felt like I was very prepared to have a baby, as much as anyone can be," Thériault claimed. "I read a lot of books, I looked up as much information as I could."
Thériault gave birth in 2011, at a time when PPOCD was even less well known and even more misunderstood.
Her symptoms began during her pregnancy, one of which was contamination anxiety. She agonized over every ingredient she ate, making going to restaurants nearly impossible; she carried around a list of fish ranked from lowest mercury content to highest.
"I remember I had a total meltdown one night because my mom had made lentil soup with red wine vinegar, which obviously does not really have any alcohol content in it, but I was beyond the realm of reality," she recalled.
I was so ashamed of what I believed to be true that it took me longer [to get help].Anne Thériault
Things only got worse after her son was born. Thériault was convinced her child had a brain injury as a result of being deprived of oxygen, though he had no symptoms to suggest this was true. Still, she spent her days and nights obsessively researching and believing she was a terrible parent.
"I truly thought, 'I have failed him,'" she said. "'He probably has this brain injury because of me. I can't be trusted to care for him. Literally anybody in the world would be more of a fit parent than me.'"
About eight weeks after giving birth, Thériault confided in a nurse about her struggles.
The nurse referred her to a social worker that very day, and a doctor later diagnosed her with postpartum depression and given medication.
Years later, Thériault read about PPOCD and realized it described her experience in a way the descriptions of the "baby blues" never had. And while her PPD diagnosis did help her, she believes having the knowledge on PPOCD would have enabled her to get well sooner.
It could have given Thériault a better understanding of what she was experiencing.
"I was so ashamed of what I believed to be true that it took me longer [to get help] because I was so racked with guilt," she said.
What to look out for before and after birth
To address disparity when it comes to PPOCD reporting and diagnoses, Refuse said medical providers must differentiate PPOCD assessment from standard OCD assessments or standard PPD assessments.
Prompting questions during assessments can help sufferers recognize and communicate their experiences, she said.
Potential questions can include:
Do you have distressing or violent intrusive thoughts, images or urges about harming your baby that cause great distress?
Do you find yourself compulsively checking on the baby, disinfecting, cleaning or washing your hands, or engaging in other repetitive activities in an attempt to alleviate anxiety?
"Active assessment for [postpartum mood and anxiety disorders] is crucial during pregnancy and postpartum stages," Rafuse explained.
Stigma and fear often prevent parents from discussing their struggles, leading to missed diagnoses and treatment opportunities.Megan Rafuse
If you are expecting a child or know someone who is, Refuse said it's important to note the signs of PPOCD.
Seeking reassurance a lot more than normal, especially whether or not the baby is safe from harm
Asking to check or double-check the baby, expressing fears of the baby being harmed in some way
Showing fear of germs or constantly cleaning
Mentioning fear of accidentally or intentionally harming the baby
"It is important to remember that the person experiencing PPOCD has no control over their thoughts and compulsions," Refuse pointed out.
"Telling them not to worry or offering increased reassurance does not treat the underlying condition.
"If you or someone you love are already living with a mental health diagnosis prior to pregnancy or birth, you should take time to make a plan ahead of the arrival with your physician or therapist to ensure that you are proactive in addressing any potential symptoms that may arise."
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