Two incredible talk’s by Eckhart Tolle that can help transform the way we look at OCD:
Wow what an inspirational video, Conor is so brave to share his struggles and bring awareness to how crippling OCD can be. It also gives amazing insight on how the thoughts, images and sensations can compound and not stop.
Great Film to raise awareness and to give insight on the struggles of OCD!
Great Article and Tips from the IOCDF website:
From the Experts
These articles are about special topics related to OCD and related disorders. For more general information, please visit our “About OCD” section.
(From Learning to Live with OCD)
By Barbara Van Noppen, PhD and Michele Pato, MD
This article was initially published in the Spring 2009 edition of the OCD Newsletter.
In an effort to strengthen relationships between individuals with OCD and their family members, and to promote understanding and cooperation within households, we have developed the following list of useful guidelines. These guidelines are meant as tools for family members to be tailored for individual situations, sometimes more powerfully employed with the help of a therapist with expertise in working with OCD.
1. Recognize Signals
The first guideline stresses that family members learn to recognize the “warning signals” of OCD. Sometimes people with OCD are thinking things you don’t know about as part of the OCD, so watch for behavior changes. It is important to not dismiss significant behavioral changes as “just their personality.” Remember that these changes can be gradual, but overall different from how the person has generally behaved in the past.
Signals to watch for include but are not limited to:
- Large blocks of unexplained time that the person is spending alone (in the bathroom, getting dressed, doing homework, etc.)
- Doing things again and again (repetitive behaviors)
- Constant questioning of self-judgment; excessive need for reassurance
- Simple tasks taking longer than usual
- Perpetual tardiness
- Increased concern for minor things and details
- Severe and extreme emotional reactions to small things
- Inability to sleep properly
- Staying up late to get things done
- Significant change in eating habits
- Daily life becomes a struggle
- Increased irritability and indecisiveness
People with OCD usually report that their symptoms get worse the more they are criticized or blamed because these emotions generate more anxiety. So it is essential that you learn to view these features as signals of OCD and not as personality traits. This way you can join the person with OCD to combat the symptoms, rather than become alienated from them.
2. Modify Expectations
People with OCD consistently report that change of any kind, even positive change can be experienced as stressful. It is often during these times that OC symptoms tend to flare up; however, you can help to moderate stress by modifying your expectations during these times of transition. Family conflict only fuels the fire and promotes symptom escalation, (“Just snap out of it!’). Instead a statement such as “No wonder your symptoms are worse— look at the changes you are going through,” is validating, supportive and encouraging. Remind yourself the impact of change will also change; that is the person with OCD has survived many ups and downs, and set backs are not permanent. You must adjust your expectations accordingly which does not mean to not expect something!
3.Remember That People Get Better at Different Rates
There is a wide variation in the severity of OC symptoms between individuals. Remember to measure progress according to the individual’s own level of functioning, not to that of others. You should encourage the person to push him/herself and to function at the highest level possible; yet if the pressure to function “perfectly” is greater than a person’s actual ability it creates more stress which leads to more symptoms. Just as there is a wide variation between individuals regarding the severity of their OC symptoms, there is also wide variation in how rapidly individuals respond to treatment. Be patient. Slow, gradual improvement may be better in the end if relapses are to be prevented.
4. Avoid Day-To-Day Comparisons
You might hear your loved ones say they feel like they are “back at the start” during symptomatic times. Or you might be making the mistake of comparing your family member’s progress (or lack thereof) with how he/she functioned before developing OCD. It is important to look at overall changes since treatment began. Day-to-day comparisons are misleading because they don’t represent the bigger picture. When you see “slips” a gentle reminder of “tomorrow is another day to try” can combat self destructive labeling of “failure,” “imperfect,” or “out of control” which could result in a worsening of symptoms! You can make a difference with reminders of how much progress has been made since the worst episode and since beginning treatment. Encourage the use of questionnaires to have an objective measure of progress that both you and your loved one can refer back to (for example, the Yale Brown Obsessive Compulsive Scale) Even a 1-10 rating scale can be helpful. Ask “How would you rate yourself when OCD was at it’s worst? When was that? How is it today? Let’s think about this again in a week.”
5. Recognize “Small” Improvements
People with OCD often complain that family members don’t understand what it takes to accomplish something, such as cutting down a shower by five minutes, or resisting asking for reassurance one more time. While these gains may seem insignificant to family members, it is a very big step for your loved one. Acknowledgment of these seemingly small accomplishments is a powerful tool that encourages them to keep trying. This lets them know that their hard work to get better is being recognized and can be a powerful motivator.
6. Create a Supportive Environment
The more you can avoid personal criticism the better – remember that it is the OCD that gets on everyone’s nerves. Try to learn as much about OCD as you can. Your family member still needs your encouragement and your acceptance as a person, but remember that acceptance and support does not mean ignoring the compulsive behavior. Do your best to not participate in the compulsions. In an even tone of voice explain that the compulsions are symptoms of OCD and that you will not assist in carrying them out because you want them to resist as well. Gang up on the OCD, not on each other!
7. Set Limits, But Be Sensitive to Mood (refer to #14)
With the goal of working together to decrease compulsions, family members may find that they have to be firm about:
- Prior agreements regarding assisting with compulsions;
- How much time is spent discussing OCD;
- How much reassurance is given; or
- How much the compulsions infringe upon others’ lives.
It is commonly reported by individuals with OCD that mood dictates the degree to which they can divert obsessions and resist compulsions. Likewise, family members have commented that they can tell when someone with OCD is “having a bad day.” Those are the times when family may need to “back off,” unless there is potential for a life-threatening or violent situation. On “good days” individuals should be encouraged to resist compulsions as much as possible. Limit setting works best when these expectations are discussed ahead of time and not in the middle of a conflict. It is critical to minimize family accommodation to OCD.
8. Support Taking Medication as Prescribed
Be sure to not undermine the medication instructions that have been prescribed. All medications have side effects that range in severity. Ask your family member if you could periodically attend their appointments with the prescribing physician. In this way you can ask questions learn about side effects and report any behavioral changes that you notice
9. Keep Communication Clear and Simple
Avoid lengthy explanations. This is often easier said than done because most people with OCD constantly ask those around them for reassurance. “Are you sure I locked the door?” or “Did I really clean well enough?” You have probably found that the more you try to prove that the individual need not worry the more he disproves you. Even the most sophisticated explanations won’t work. There is always that lingering “What if?” Tolerating this uncertainty is an exposure for the individual with OCD and it may be tough. Recognize that the person with OCD is triggered by doubt, label the problem as one of trying to gain total certainty about something that cannot be provided, this is the essence of OCD and the goal is to accept uncertainty in life. Avoid lengthy rationales and debates.
10. Separate Time Is Important
Family members often have the natural tendency to feel like they should protect the individual with OCD by being with him all the time. This can be destructive because family members need their private time, as do people with OCD. Give them the message that they can be left alone and can care for themselves. Also, OCD cannot run everybody’s life; you have other responsibilities besides “babysitting.” You need and deserve time to pursue your interests too! This not only keeps you from resenting the OCD it is also a good role model to the person with the OCD that there is more to life than anxiety.
11. It Has Become All About the OCD!
Whether it is about asking and providing reassurance to the family member with OCD or talking about the desperation and anxiety that the illness causes, families struggle with the challenge of engaging in conversations that are “symptom free,” an experience that feels liberating when achieved. We have found that it is often difficult for family members to stop engaging in conversations around the anxiety because it has become a habit and such a central part of their life. It is okay not to ask ”How is your OCD today?” Some limits on talking about OCD and the various worries is an important part of establishing a more normative routine. It also makes a statement that OCD is not allowed to run the household.
12. Keep Your Family Routine “Normal”
Often families ask how to undo all of the effects of months or years of going along with OC symptoms. For example, to “keep the peace” a husband allowed his wife’s contamination fear to prohibit their children from having any friends into the household. An initial attempt to avoid conflict by giving in just grows; however, obsessions and compulsions must be contained. It is important that children have friends in their home, or that family members use any sink, sit on any chair, etc. Through negotiation and limit setting, family life and routines can be preserved. Remember it is in the individual’s best interest to tolerate the exposure to their fears and to be reminded of others’ needs. As they begin to regain function, their wish to be able to do more increases.
13. Be Aware of Family Accommodation Behaviors (refer to #14)
First there must be an agreement between all parties that it is in everyone’s best interest for family members to not participate in rituals (Family Accommodation Behaviors). However, in this effort to help your loved one reduce compulsive behavior, you may be easily perceived as being mean or rejecting, even though you are trying to be helpful. It may seem obvious that family members and individuals with OCD are working toward the common goal of symptom reduction but the ways in which people do this varies. Attending a family educational support group for OCD, or seeing a family therapist with expertise in OCD, often facilitates family communication.
14. Consider Using a Family Contract
The primary objective of a family contract is to get family members and individuals with OCD to work together to develop realistic plans for managing the OC symptoms in behavioral terms. Creating goals as a team reduces conflict, preserves the household, and provides a platform for families to begin to “take back” the household in situations where most routines and activities have been dictated by an individual’s OCD. By improving communication, and developing a greater understanding of each other’s perspective, it is easier for the individual to have family members help them to reduce OC symptoms instead of enable. It is essential that all goals are clearly defined, understood, and agreed upon by any family members involved with carrying out the tasks in the contract. Families who decide to enforce rules, without discussing it with the person with OCD first, find that their plans tend to backfire. Some families are able to develop a contract by themselves, while most need some professional guidance and instruction. Be sure to reach out for professional assistance if you think that you could benefit from it.
Barbara Livingston Van Noppen, PhD is an Associate Professor in the Department of Psychiatry and Human Behavior and Assistant Chair of Education Keck School of Medicine University of Southern California.Dr. Van Noppen provides CBT supervision and didactic education to psychiatric residents in the USC Keck School of Medicine program.
Michele Tortora Pato, MD is the Della Martin Chair in Psychiatry and Associate Dean for Academic Scholarship at the Keck School of Medicine-USC.
I discovered Davind Goggins a few years ago, his passion and growth is inspirational. One of my favourite quotes of his that I use to tackle my OCD is “The path to success will leave you callused, bruised, and very tired. It will also leave you empowered.” – David Goggins
His mentally on facing fears and attacking things head on inspire me to continually do my exposures. When my intrusive thoughts are making me suffer I remind myself that sufferings is integral to growing because once I face the fear I become stronger, and more prepared to handle the ups and downs that are the reality of life.
The strength of our mind and being able to will ourselves into transitioning from being debilitated to in control of how we react and feel towards OCD.
Goggins a previous navy seal speaks about his experience being beat, starved and forced to spend hours in extreme conditions during training. The leaders of the training got to go home relax with their wives and children, while him and the rest of the seals had to stay outside in the cold and suffer. Rather then wishing for the suffering to end he showed the leaders that they can’t get to him, and he smiled instead of wallowing in the pain. He had a paradigm shift and accepted his suffering, rose above it and shifted the power dynamic. This is exactly what is most effective with OCD, it will tell you that your a horrible person, you are disgusting, cruel or that everything should be feared but what if instead of listening and falling for its demands you smiled right at it and took away its power? Life is full of self hate, and external pressures and unfortunately bullies exist and all we can control is our reaction to them.
So, next time OCD tells us we are weak or that doubt creeps up again remind yourself you’ve been through this before and take away the power by building mental strength that it can no longer penetrate.
I highly recommend watching David Goggins and hope you feel inspired by his words!
Great article by Birgitte Hunt
2018 can leave now.
2018 was the year where OCD hijacked my daughter’s brain and took our family hostage.
It was the year where everything I thought I knew about OCD was challenged and I came to realize the stigma and misconception that surrounds it. OCD is the “neat disease” right? WRONG! Sure, for some people, compulsions do involve a need for order, but for many, OCD creates chaos not just in their heads but all around them. My daughter’s room was perpetually messy, she was highly unorganized, extremely forgetful, and had trouble focusing. There was nothing “neat” about OCD in her case. It was ugly and chaotic all around.
Until 2018, I was blissfully unaware that OCD has “themes.” It was the year where my family came face to face with perhaps the most horrendous one of all of them. Common types of OCD that no one ever talks about are Harm OCD, Sexual Orientation OCD (HOCD), Pedophile OCD (POCD), Scrupulosity OCD, Relationship OCD (ROCD) and “Pure O” OCD — just to name a few. Every sufferer will tell you that their theme is the worst, and that they wish they could trade it for any other theme. However, while I won’t argue that every OCD theme is living hell for the sufferer, some themes are evidently surrounded by more shame, guilt, disgust and fear than others. My daughter’s OCD convinced her she was a monster. Awful.
2018 was the year where I had to witness my child in unbearable mental and physical pain, where I had to listen to her talk about the disturbing images in her brain, the horrific nightmares, unable to end the torture. Thinking of this now feels like my heart is being ripped out of my chest all over again. I would be awoken by sobs or cries coming from her room so many mornings that I started waking before the crying would start, and just lie in bed and wait for it. Weeks would pass after she had gotten better where I would still be jolted awake thinking I heard her cry.
2018 was the year where my rational and logical brain had to stop trying to understand or explain OCD. I’ve always been one to want to understand or explain things logically, but OCD pulls you into a rabbit hole where nothing makes sense. It has no logic. It lies. It asks questions that can’t be answered almost to the effect of “How long is a rope?” Right.
2018 was the year of trying to navigate the mental health care system and insurance coverage/policies, of doors being slammed in our face, of having to entrust my precious child’s brain to professionals who sometimes had conflicting opinions on what the best and most effective treatment would be.
It was the year of trial and error as far as medication was concerned resulting in even more heartache and despair, until we got it right. This process took about 10 months.
It was the year where I had to give up my job to take care of a completely debilitated child. Feeling tremendous guilt for focusing all of my attention on her and very little on her 13-year-old brother and her dad — my rock — who was tasked with carrying the financial burden of taking care of a family alone on top of the pain of watching his little girl suffer and sometimes reject him.
2018 was the year where extensive testing proved what I’d already suspected: that my daughter is extremely intelligent (IQ in the 98th percentile), the year of trying to figure out how to support her at school, and of navigating 504 and IEP plans. It was the year of endless meetings with school counselors and psychologists and vice principals, the year of pleading with teachers to support my child who wanted so badly to do well and please everyone, but who struggled so much to meet deadlines because of the chaos in her head.
2018 was the year where I became OCD’s punching bag. The year where I was cussed and screamed at, had things thrown at me, was called every name in the book and was blamed for everything that didn’t go right every single day. It was the year where I’d lie and cheat and tell my daughter whatever I thought she needed to hear to feel better and let me be. Where I got sucked into her compulsions and inadvertently became part of her disorder.
It was the year where OCD nearly destroyed my family. The pressure and frustration and hurt kept building and building; it isolated us, and made us turn on each other. When one family member is as sick as my daughter was, it prevents you from doing anything and everything you used to do as a family.
It was the year where something so heart wrenching as hearing my child talk about wanting to die (though she did not have a plan and always assured me she wouldn’t ever kill herself because she knew how sad it would make me) just became “a Thursday.”
It was the year where she and I took a much anticipated trip to Denmark to visit family that just ended in heartbreak, gut-wrenching fear, escalated compulsions, and a trip back home to the US soon after our arrival.
2018 was the year where I was tested mentally, emotionally and physically like no parent should ever be tested. A year that felt like death by a thousand paper cuts. Where I sometimes just wanted to give up and send her away. Where I cried nearly every day. Where I resented my child for having a disorder she couldn’t help. Where I just wanted to fall off the earth and disappear so I wouldn’t have to live another day of the pain I was feeling. Where I screamed at my child when I should have remained calm, but also where I ultimately discovered a strength within me and her that I didn’t think either of us possessed.
And finally 2018 was the year where — after eight long, tough months of worry and despair and heartbreak and feeling completely powerless as a parent — my daughter was finally admitted to UCLA’s OCD IOP for Children and Adolescents and her journey towards recovery began.
It has been a long, mentally draining 12-week journey (so far) of ERP (Exposure Response Prevention) therapy that has challenged all of us, sometimes past our breaking point, way beyond our comfort zone, but at the same time empowered us to keep going. OCD didn’t break us. Despite everything we’ve been through, we stayed the course and persevered.
I wrote this in the waiting room while my daughter was doing her exposure treatments. My hope was that our family’s experience would become a resource for parents of teenagers with POCD to reference as they tackle this horrendous OCD theme which is surrounded by so much guilt and shame that no one ever talks about it. We have to talk about it. There have to be more articles written about the ugly side of OCD. The sexual themes. The themes concerning the fear of harming oneself or loved ones. Information about these dark themes is not easy to come by which makes you feel isolated and hopeless when initially faced with it.
My goal was to keep a log tracking my daughter’s progress and/or setbacks from start to finish. But it quickly became evident to me how emotionally and physically exhausting the process would be and I honestly never really had the energy to experience it all one more time in the process of writing it down. So I didn’t. But it’s forever edged in my memory and I wish it could’ve become a book. This will have to do for now. Maybe some day…
The list of emotions felt by everyone in our family this past year is extensive: hope, fear, despair, pride, anxiety, resentment, excitement, relief, grief, stress, loneliness, exhaustion, joy, frustration, love, pain, desperation, sadness, unity… it goes on. Literally, a roller coaster ride of emotions, which we rode until we were sick to our stomachs and finally were let off. Ups and downs. Ups and downs.
After 12 weeks of intensive treatment, we are looking at discharge from UCLA in the not so distant future. Another case of mixed emotions — wonderful and terrifying news all at once. What’s going to happen once we’re on our own’? When we no longer have a team of highly experienced and qualified OCD specialists keeping us on course? A team of super heroes.
My daughter does not have any physical compulsions anymore. I compiled a list of her compulsions in preparation for her intake evaluation 13 weeks ago and when I look at it now I’m AMAZED at what she has accomplished in 12 short weeks. She still has work to do but she’s stronger and better equipped to handle what OCD throws at her in the future. So am I. Her recovery has not been linear. Two steps forward, then a step back. A dance with the devil who’s refusing to let go.
The first week in treatment the therapist my daughter was working with asked her if she wanted children of her own. It crushed my heart when she looked down at her feet and quietly said “no.” A couple of weeks ago, after 9 weeks, she said “I hope I have a little girl — I think I would be a good mom”… It totally made me choke up.
You can go now, 2018.
I have been given the pleasure to post my friends personal story around how OCD has impacted his life.
My OCD struggles started at a very young age. I knew something wasn’t right, but I couldn’t put a finger on it. I remember chewing gum a certain way, and I had to chew it ten times on each side of my mouth at any given time. I also remember checking, and making sure doors, and windows were locked. I also checked over and over if the appliances were turned off completely. It literally became a chore, and it gave me extra anxiety and stress I didn’t need. What struck me the most was that during school, I never really had OCD pop up. I used to place my bag on the ground without the fear of contamination. I remember being able to use a public restroom without hesitation, or anxiety. Now, it’s literally an every day struggle. People don’t seem to realize the mental strain this illness has. It can be so overwhelming at times; you just wish you didn’t wake up the next day. It can get that bad!
Through my life experiences so far, a lot of my OCD stem’s from lack of serotonin (clinically speaking), but I noticed my OCD got worse from trauma I experienced in my life. Due to the constant stress my brain went through, it just made the mental illness worse. It came to a point where I couldn’t take it anymore and I tried to end my life. Stupid move, I know, but thankfully I survived my suicide attempt, and I am very thankful for it. The best way’s I find to deal with OCD is to tell yourself “Nothing bad is going to happen, if I don’t do the compulsion.” You just have to keep repeating this over and over in your head until it finally registers and you don’t do the ritual. Distraction is another great coping mechanism. When the compulsion pops up in your brain, just do push-ups, or put a cold towel on your face. Doing so will distract your brain, and in return the OCD will subside. Another way to cope is to join group therapy, which I did, and as a result made wonderful friends. Now we all struggle together! Also, it’s quite ok to make fun of yourself, and the illness. I find that laughter is the best way to cope, and it just takes the stress away! As they say, laughter is the best medicine.
Just remember, you aren’t alone. There are millions suffering with this illness, and don’t ever give up. Keep going, keep laughing, and in the end you’ll realize the illness makes you unique. And, it’s better to be different instead of generic. Keep fighting!
I want to preface this with saying this blog post is not medical advise and to speak to your attending physician in regards to TMS as a treatment option. Especially to discuss the risks and side effects of treatment.
There has been a lot of media coverage around TMS (Transcranial Magnetic Stimulation) in the past year and how effective it is for mental illnesses such as depression, anxiety, and even addictions.
What is TMS?
From the International OCD Foundation:
Recently, psychiatric research has become increasingly focused on the idea that the structure and function of the brain’s “neural networks” might play a part in OCD. Consider your brain from this perspective. Your brain is made up of cells called “neurons” which communicate with each other. When several neurons work together, they are referred to as a circuit or network. If you’ve ever taken apart a computer or other electronic device, you’ve likely seen a green plastic board covered in gold circuits. Much in the way electricity travels through this circuit board to convey information from one part of the computer to another, your brain uses neural networks to convey information from one part of the brain to the other.
So, instead of targeting neurotransmitters (the chemicals used to communicate between individual neurons) researchers are now looking at how neural networks function to communicate from the parts of the brain that regulate, say, emotions to the part of the brain that regulates movement. It is our hope that new treatment methods that focus on neural networks, rather than neurotransmitters, may offer help to those individuals who have not had success with other treatment methods.
-Jeff Szymanski, PhD, Executive Director of the IOCDF
There are a few different machines out there that are used for TMS treatment, that uses magnetic fields with a coil to stimulate the areas of the brain. The treatment is suppose to be well tolerated and non invasive.
The FDA recently approved the Brainsway TMS device for the use of treatment of OCD. The FDA reviewed data from a randomized, multi-center study of 100 patients, of which 49 patients received treatment with the Brainsway device and 51 received treatment with a non-working (sham) device. Patients already receiving OCD treatments (medical management) were maintained at their current dosages throughout the study. The study evaluated the reduction in patients’ Yale-Brown Obsessive Compulsive Scale (YBOCS) score, a common metric for measuring the severity of a patient’s OCD. The results indicated that 38 percent of patients responded to the Brainsway device (i.e., greater than 30 percent reduction in YBOCS score), whereas 11 percent of patients responded when using the sham device.
To get more information about Brainsway TMS – https://www.brainsway-global.com/
Is TMS coming to Edmonton?
The mental health foundation released the following statement:
We’re happy to announce that, thanks to your contributions, Alberta Health Services (AHS) has been able to move forward with plans to bring the devices to a local primary care center, and has staff spending the summer identifying the ideal location to house the 4 new machines. The Oliver Primary Care Network has expressed interest, and is being carefully considered.
The Edmonton TMS program will be the first in the province, and as such, AHS is taking care to develop a program that they can replicate across the province while maintaining consistency.
Program coordinators are currently connecting with physicians to guide implementation, and will begin hiring staff for operations in the fall. Our goal is to see the machines fully operational in early 2018, and partially operational by the end of this calendar year.
– Mental Health Foundation
I am excited to see that more treatment options are becoming accessible to sufferers and look forward to see new publications around TMS for OCD.
Three weeks after Chelsea Elker gave birth to her second baby, she was overwhelmed by a thought that also felt something like an urge: What if she smothered him?
Elker, who was peacefully nursing at the time, had never experienced anything like that when her eldest was born, and was horrified.
From that night on, however, the disturbing thoughts kept coming.
As she buckled her newborn into his car seat, Elker worried: “What if I touch him inappropriately?” As she washed dishes she’d think: “What if I stabbed him?” Elker reassured herself that of course she would never hurt her baby, only to immediately question why, then, she’d even entertain such ideas in the first place.
“It’s hard to explain,” Elker, now 29 and a mother of three, told HuffPost. “I felt like, ‘If I’m thinking it, it obviously means I want to do these things.’”
In the last decade, awareness about postpartum depression has exploded as research has revealed it affects anywhere between 10 and 20 percent of moms. Likewise, knowledge about postpartum anxiety — which could affect up to 17 percent of new moms, according to some estimates — has also begun to spread among women and health care providers. Mothers struggling with anxiety and depression now at least have some kind of name and explanation for the things they are feeling.
For the smaller subset of mothers who have postpartum obsessive compulsive disorder, that kind of broad — or even broadening — recognition of their circumstances simply does not exist. “OCD” has become a watered-down term, an acronym thrown around in conversations about that friend who’s just a bit too fastidious or who is especially germaphobic.
But for mothers tormented by the condition, it signifies something much darker — a cycle of fears and behaviors that grabs hold of them and threatens to upend their sense of who they are in one of the most grueling, vulnerable moments of their lives. And many find it impossible to open up, gripped by fears that someone will take their baby away.
“It became 100 percent of my day and 100 percent of my nights,” Elker said. “I could be having a conversation with you and inside I’m thinking 1,000 different, terrible things.”
Inescapable ‘Intrusive Thoughts’
In many ways, OCD — perinatal or otherwise — is simple to identify. Its signature symptoms are intrusive thoughts and fears (i.e. “obsessions”) and often rituals (“compulsions”) aimed at making those thoughts disappear.
Under the DSM-5 — the most recent version of the “bible” of psychiatry — OCD was given its own chapter and moved out from under the broader umbrella of anxiety disorders. There is no diagnostic distinction between OCD that begins during the postpartum period and at other times in a person’s life, though women who have experienced anxiety and OCD in the past are at higher risk of dealing with it again postpartum.
In new moms with OCD, however, the intrusive thoughts that are a hallmark of the disorder tend to center around one thing: their babies. Suddenly, a woman who longed for motherhood may be utterly convinced that something or someone — perhaps even herself — is going to hurt her child in ways she’d never considered before, either deliberately or through carelessness.
“I had a patient who presented at five or six weeks postpartum with her fourth baby, and she had a precipitous onset belief that she couldn’t be near knives,” Dr. Catherine Birndorf, co-founder of The Motherhood Center of New York, a clinic that specializes in perinatal mood disorders, told HuffPost. “She couldn’t be in the kitchen. She had visions of taking a knife and cutting her infant’s throat — and she was absolutely freaked out by these intrusive, violent images. That’s super common in perinatal OCD.”
Moms who experience those thoughts are almost immediately overcome by shame and horror, which is the primary way experts distinguish between OCD and postpartum psychosis, a rare, severe psychiatric emergency in which new moms can absolutely pose a threat to themselves and their babies.
“OCD is what we call ‘egodystonic’ in so much as it is upsetting and exhausting to have the thoughts and do the actions you do to try and make yourself feel better,” Birndorf explained. In postpartum psychosis, delusions and hallucinations take over.
Loretta Notareschi, 40, gave birth to her daughter in 2013 and had her first intrusive thoughts — about throwing her down the spiral staircase in her home— while she and her baby were recovering in the hospital. It wasn’t a hallucination or a desire, but it gripped her imagination nonetheless. She told a nurse who reassured her that she was probably just exhausted, but before she was discharged she had to meet with a social worker.
“I was triggered by all kinds of things, especially the spiral staircase or knives,” Notareschi told HuffPost. “Bathtubs. Being in the car. I would think, ‘What if I hurt her with that?’ Or, ‘What if I hurt myself with that?’”
Over time, she began to develop what she thought of as coping mechanisms, though later she learned they were simply the hallmark compulsions of her illness.
“To the OCD mind, they seem like brilliant ways to deal with your anxiety,” Notareschi said, laughing ruefully. “I decided in the first couple of days after my daughter was born that every time I had a scary thought I would have to repeat to myself a certain phrase, which was ‘Baby face, hairbrush, duckie.’ In my mind, it was going to neutralize the thought or magically make it OK.”
An Adaptive Behavior … Gone Wrong?
Interestingly, research suggests that some elements of postpartum OCD may be adaptive. A 2013 study of roughly 400 women found that 11 percent of new moms were experiencing some obsessive-compulsive symptoms two weeks after giving birth. Six months later, nearly half of those women still had symptoms, while another 5 percent of moms had developed symptoms at that point.
That study asked if women were having any symptoms of OCD, not if they met the criteria for an actual diagnosis. But it raises the possibility that the prevalence of the disorder is much higher than the 2 percent that is often cited — and raises tricky questions about what’s normal (and what is not) in the minds of new mothers faced with the daunting task of keeping a helpless newborn alive.
“One of the most common obsessions is fear about germs, and some of the most common compulsions are checking behaviors and washing behaviors,” Dr. Dana Gossett, a professor of obstetrics and gynecology at the University of San Francisco California and the author of that 2013 study, told HuffPost.
“It’s not crazy to think that if a woman has a newborn, she might want the house to be clean and for people’s hands to be clean,” she continued. “It’s not unreasonable that she would want to check on her baby frequently to make sure he or she is OK. What happens in OCD is that is carried to a point where it is no longer logical or productive.”
And when those thoughts become intrusive and frightening, mothers become understandably fearful to come forward to share what they’re going through — and to be counted.
“We know depression is common. It’s well studied and there’s a lot less stigma now than there was 15 years ago around articulating feelings of sadness,” Gossett said. “Whereas if a mom says, ‘I’m terrified I’m going to burn down the house’ or ‘I’m terrified I’m going to shake my baby to death,’ there’s so much more shame and fear.”
And it is not unreasonable for women to worry that their babies could be taken from them, she added.
“One of the challenges about OCD is that it is less broadly known, so even OBs and pediatricians who are good about screening for depression are going to be less familiar and less comfortable with these diagnoses — and how to make that distinction between psychosis — so women get the help they need,” Gossett said. Postpartum Support International, an advocacy and education group, says that postpartum OCD is the most misunderstood and most commonly misdiagnosed of the perinatal mood disorders.
That is what makes postpartum OCD so heartbreaking. Like so many other mental health issues that crop up during the tumultuous postpartum period, experts say it is highly treatable with some combination of therapy, support, medication and time. But in a culture that demands moms cherish every exhausting moment of raising young children, admitting to frightening obsessions can feel impossible.
“I didn’t want to tell anyone, because all the media tells you with stories about women who hurt their babies is that if you think a thought, you want to act on it,” said Elker, who took more than a year to recover from postpartum OCD through a combination of intensive therapy and medication and has written extensively about her experience.
“But I didn’t want to hurt them,” she said. “I was so fiercely trying to protect them that I drove myself insane.”