From a 15-year old patient with BDD
I had always had issues with my body, but not the way I did at the beginning of eighth grade. I remember the first day I started to obsess over my hair. I had cut my bangs myself (something that I would never dare to do now), and went to the hair dresser to get them fixed. I went back home thinking everything was fine until I looked in the mirror and saw a tiny piece of hair that was shorter than the rest. I broke down crying, feeling like the whole world was ending. From that day on I had been mirror checking at least 10 hours a day and sometimes went to the hairdresser twice a week. I was completely obsessed with having every strand of my hair look right. My family didn’t understand at all and it was hard to explain to people what I had. My friends looked at me like I was crazy and it was embarrassing to keep going back to the hairdresser asking them to fix my bangs. I would go to the guidance counselor at school basically every day since I couldn’t concentrate on my work. Then I started CBT at Mass General Hospital and got the help I needed. I highly recommend them for anyone who is suffering with OCD or a related disorder. I am getting better, but my therapist told me, there will likely be some days that are harder, but you just have to keep trying. That’s all that matters. Thanks for reading and remember to stay strong, take action, and get the help you or a family member need.
From a parent of an adolescent with BDD
If you are reading this you probably already know how devastating BDD can be for the sufferers and their families. Our world fell apart when my daughter was in eighth grade. She clearly was having a very hard time and she confided in me with her concerns. I was sure it was adolescent related and I kept talking to her figuring that I would eventually say those magic words that would make her all better. When that did not happen we found a local therapist for her to talk to. The sessions were not helping but the therapist did have a diagnosis. As soon as I got online and read about BDD I knew that this is what she had.
I went and bought The Broken Mirror by Katharine Phillips and read it in a day. I read that BDD patients need to be treated by professionals trained in helping those with BDD. Back then, our options were Rhode Island, Maine and Boston. We called the BDD clinic in Boston and made an appointment for an evaluation as part of a clinical trial that they were conducting on cognitive behavior therapy for children and adolescents. I remember crying on the phone with them begging for their help because there weren’t any other options. Our daughter started her 6 month CBT therapy with the psychologist. I remember the first three months being very difficult. She would cry most of the way home. It was hard work. Then things started to get better. At about four months she was really improving and I remember her agonizing over what will happen to her when the therapy ends. By the end of the trial she was doing amazingly well!! She even said that she thought she would be fine once the therapy ended.
Things were pretty good for about nine months. Then I noticed that the rituals that she worked so hard in therapy to control were creeping back into our lives. She was spending more and more time in the mirror and I knew we were in trouble. She had a relapse that was so bad she was unable to function in school. We tried a number of other therapists in our area that were not specialists in BDD since we could not find any that were. They could not help her. Because she was so depressed we decided to put her on Lexapro. She still takes 20mg a day. Her depression lifted but the BDD wasn’t getting any better. We went back to Boston to get specialized CBT for BDD. She started practicing her skills and started to get better again. She still sees her CBT therapist whenever she really needs to. She is in college now and functioning quite well although the ups and downs are still there. Transitions can be tough, but she knows her triggers and how to get through them using her CBT skills.
Our road has been long and exhausting but I know one thing for sure. Our daughter would have no quality of life if it weren’t for the amazing people at the BDD clinic in Boston. She is happy most of the time, functions very well in college, and handles most of her BDD issues on her own now. She is maintaining good grades, a member of several clubs, and a leader on her residence hall. When I think about how she was and where she is today it makes me so hopeful for her future.
I think that the medicine has been extremely helpful in keeping her more steady and helps her to be able to practice her CBT on her own. The most important advice I could give to a parent is to find experts to help your child. The only therapists that helped us were the experts in Boston. I also believe that Cognitive Behavior Therapy is amazingly effective if you and your child are willing to do the work.
Our lives are as close to normal as they have ever been since this all started six years ago and that is all thanks to her CBT therapist’s amazing dedication and expertise and my daughter’s willingness to work hard to fight back against the thoughts that constantly invade her life. We are so incredibly proud of her!!
From a parent of adolescent with BDD
I thought it was very low self esteem. Her father thought she was way too preoccupied with the mirror and her physical appearance. Social media has been exploding with images of how girls (and boys) should look. Was this just what teenagers are going through now? Although, this had a different dimension, an excessiveness and compulsiveness that was undeniable. Any attempt I made to draw her away from this self pre-occupation was only short-lived. There was also anxiety, sadness and depression. It interfered with her ability to participate in activities at school, with friends and sometimes even with family. Her academics continually dropped. School brought on additional anxiety, as she perceived that people were always looking at her and judging her for her perceived flaws. As the years passed, I watched her daily try to create some way to cover her “flaws”. She would zero in and lock on. One day her nose, another her hair, or skin, eyes or tummy, and so on. There was my 17 year old daughter, and then there was something else that took over her thoughts creating some form of ugliness or distortion.
As her mother, these years have been very difficult and extremely painful for me to observe and know that other than being a “safe” person for my daughter, I couldn’t make it OK. We tried traditional therapy for years, changing clinicians, trying to find the right one to relieve her.
My daughter has lived day to day for many years struggling, yet also knowing that what she was experiencing wasn’t normal. She actually researched on her own and felt that she had this disorder, which I and many professionals hadn’t even heard of. Her pediatrician listened to her carefully and gave us some direction, which ultimately led us to the OCD and Related Disorders Program at Massachusetts General Hospital in Boston.
From the very first appointment, my daughter was able to have dialogue with someone who actually understood her, the pain and the disruption in her life. She no longer felt shame for behaviors of the past, such as excessive preoccupation with physical self, constant mirror checking and the unquenchable need for reassurance/compliments. She had a diagnosis and was ready to move forward. She experienced some relief immediately and did her homework diligently. The program has taught my daughter how to recognize the onset and triggers of episodes, and has given her new insight to this disorder. She now has the tools to manage BDD. Her grades are good and she freely participates in activities. Her life is so much brighter now.
We are grateful to the staff and this incredibly effective program at MGH.
From a 17-year old patient with BDD
I sit today reflecting on my journey of many years through obsessiveness, compulsiveness, distortion, depression and darkness. I have known all along that something was not “normal.” Everyday has been a battle and I was always drained. I was being robbed of my focus, vitality and enthusiasm for life. My grades were on a steady decline. The simplest activities could not be enjoyed. I was overwhelmed with life. After years of doctors visits, inconspicuous pain and therapy sessions, there was never a diagnosis. Through personal research, I discovered body dysmorphic disorder. After a series of discussions and screenings, I ultimately ended up at the OCD and Related Disoders Program at Massachusetts General Hospital.
Once accepted into the program at MGH, I was excited at the prospect of some relief, yet at the same time very apprehensive. I wondered how could someone change what I see and essentially how I felt? I feared I would be trained to not care about my appearance anymore. Rather, through the program I learned how to recognize my irrational thoughts, identify the triggers and manage my feelings. I feel that the staff involved with this program at MGH understood what I was living through and that I had a truly compassionate support system in place. Right from the start I committed to the program and did the “homework” which was practicing what I learned in each week’s session. So, each week I actually felt better!
I now am living with the skills to manage my BDD. My grades have improved and I am enjoying all that each day brings.
From a patient with BDD by Proxy
I have suffered with BDDBP (Body Dysmorphic Disorder by Proxy) for forty years, well before there was a name for it. It started with my first wife being the POC (Person of Concern). I would notice things about her which I perceived to be deformities. Although my observations were twisted by BDDBP, at the time, I did not know why these things bothered me so much. She was perfectly normal by any standards except mine. I believed her legs were too short for her body, her nose was deformed, one breast was slightly larger than the other, but to me there was a freakish difference between the two. I also felt that her forehead was too large. The guilt and anxiety I felt from my observations was debilitating.
If I were to have one of these thoughts while making an important decision or performing a task, the decision and task would be linked to and contaminated by the thought. From that point on, anytime I were to think of the decision or the task, I would have great anxiety and be reminded that I had unflattering thoughts about my wife, which would cause me extreme guilt.
I would go through a number of rituals to try and reverse the contamination which only made the feelings more intense. Some of the rituals were common OCD rituals, like hand washing and counting. A bit more involved was trying to undo the thought I had by thinking back to the time when I had the thought. I would try to adjust the sequence of events in my mind so that the thought never existed. It did nothing to lessen my anxiety or guilt, it only made it worse. I was married to her for eleven years and had these problems every day for the entire time. My areas of concern changed from time to time, but any new ones were just as troubling as the previous ones and eventually the older ones would come back.
At this point, I sought professional help. At the time, not enough was known about OCD, and certainly not BDDBP. I was put on antidepressants, which really did not help my symptoms.
Once my first wife and I divorced, my POC became my daughter. I felt her forehead was too large, and I could not stop obsessing over it, however, the original thoughts about my ex-wife would still surface.
Around this time I developed a new ritual. When I had a troubling thought I became extremely anxious which would make me feel as if I would defecate. My sphincter would contract and I felt I had to hold it that way so there would be no chance of me defecating in my pants. Since you can’t hold your sphincter closed forever, when it finally did release, it would force me to run to a bathroom to wipe and check to see if anything had come out, although nothing ever did. Although there was nothing there, I continued wiping because of the OCD feeling of not being 100% clean. This could last for up to an hour or longer.
Also, during this time, I self-medicated with drugs and alcohol. I went to see different therapists and was diagnosed with OCD, and they continued to give me antidepressants.
This continued on for 9 years with my ex-wife and daughter being the POCs. At this point I met my current wife, and she replaced my ex-wife and daughter as the primary POC. The POC is always someone held in high esteem. Along with this development came a whole new set of thoughts specific to her.
The BDDBP thoughts about my wife started with me thinking her labia was too large. Then it went to her hips being too large, that followed with her butt seeming too big and her lower abdomen being too large. Although she is small on top, when all these thoughts are connected, it makes me think of her shape being that of a pear shape or being two separate people, the top being one and the bottom being the other.
Therapy would help to some degree with the OCD, but not with the BDDBP since no one had ever heard of it, and it was not an acknowledged disorder.
The anxiety and guilt brought on by these thoughts made my work career hell, often failing at things I should have been able to do easily. Also relationships became difficult. My relationship with my current wife all but fell apart and I had nearly given up hope.
In 2013, after much research online, I found a program dealing with BDDBP. It was located at the OCD and Related Disorders Program at Mass General Hospital, in Boston, MA. The program dealt specifically with BDDBP. I enlisted in the program which was a BDDBP clinical study and I worked with Dr. Jennifer Greenberg, who is a pioneer in this disorder.
Dr. Greenberg informed me that what I had was BDDBP. This was the only therapist I had ever gone to who knew about my specific symptoms. It made me feel very comfortable to work with someone knowledgeable about what I was going through. When I would explain a symptom to her it almost seemed like she was already familiar with the feelings that I was experiencing even if I had difficulty explaining them. Her memory for even the smallest detail that we discussed was impressive, and made me feel she was genuinely listening to what I had to say.
I met with Dr. Greenberg for 20 weeks. We first explored my history in depth—thinking about how my symptoms may have initially developed and then focusing on what is keeping them active in my current life. She then provided me with many helpful tools to deal with this disorder. This was the first time that I experienced specific therapy geared towards the BDDBP symptoms. In sessions as well as during the week between our meetings I had to practice the tools Dr. Greenberg taught me. For example, I was quick to jump to black and white thinking or to focus only on small details, but I learned how to step back and challenge these beliefs. I also learned how to look at the big picture, for example at my wife’s whole appearance, in an objective way, without focusing too much on any specific area or without judgment or comparing her appearance to others. These skills helped me be less in my head and participate more in the world. Further along into treatment we challenged my core beliefs, which were contributing to an enormous sense of guilt I’d carried with me for several years. Using techniques like the self-esteem pie and the continuum, I was able to challenge a negative belief I had carried with me for many years and for the first time, I felt some relief from the guilt. I still practice my skills regularly every day and review my worksheets often. I was recently reviewing old worksheets from earlier sessions and found they no longer applied—meaning that the same things that were so hard when I first started no longer evoked anxiety or triggered any new intrusions. I also still practice exposure every day even though now it’s more on the fly instead of planning it ahead.
The program was ground breaking in that it is extremely effective focusing specifically on BDDBP problems. The therapy is a new area of research in conjunction with the standard OCD therapy.
Working with the new tools that I have learned from the BDDBP program at MGH, the quality of my life has improved significantly. Everything seems brighter. I love my wife very much and always have, but it’s been several years since we could even be in the same room because of my intrusions. Now, I compliment her often and I can sit in the same room next to her. I notice that we spend more time together. I ask about her day and I can really listen to her. I can hug and kiss her and I like sharing a bed with her. I help out around the house, and it makes me feel good to stay active. This is the best I’ve felt in 40 years and my wife has appreciated this. I’ve noticed that her mood is more positive too. I have now come to a conclusion that is based on an acceptance of what I see—I can take in the whole picture of my wife, and what I see is pretty good!
A Proper Send-Off from Those Who Have Gone Before
A few years ago, several patients who participated in a BDD group run by a colleague Dr. Michael Otto decided to write a message to other people with body image concerns. Here is what they have to say to you:
We have been where you are now, and we want you to know:
We care about you.
You are not alone. Other people have the same problem.
We are glad you are thinking about change.
Be angry at the problem, not at yourself.
Drop the shame. The feelings that you have are not your fault.
Stop criticizing yourself. You are struggling with a problem; treat yourself well.
Pay attention to the things that you enjoy, not your skin, hair, and so forth.
It is the inside that needs your attention, not the outside.
Comparing yourself to others is a waste of time. It is not a competition; it is about enjoying your life.
Don’t isolate yourself.
Give yourself credit for the smallest effort.
Try to live in the present. It’s all about creating pleasure and meaning in your life, not past regrets.
You can’t wait to feel good to do something. Sometimes you change how you feel by changing what you do.
It is a progression; Listen, learn, and change your life.
© Feeling Good About the Way You Look. Sabine Wilhelm, PhD. 2006. Copyright Guilford Press. Reprinted with permission of The Guilford Press.
A letter from a patient
I knew something was seriously wrong when I was outside with my two and a half year old daughter and I had a panic attack over my looks. I was so afraid that someone would see me and I hated how I looked. I was sobbing and shaking and trying to hide under my back porch while my child was crying in the swing. This was the bottom. Before this attack I had just been avoiding going outside on days where I hated my appearance. For me, it was all centered around my hair. I would stress over every piece that would fall from my head. I would wake in the morning in a cold sweat, knowing I had to wash and blow dry it. It literally controlled every aspect of my life. It was starting to affect my marriage and friendships. My family and close friends told me nothing was wrong with my hair. Their words were of no comfort. I was convinced that my hair was thinning and that it was ugly and that everyone would notice and judge me. I felt I was unlovable and of no worth. It was a horrible time.
The day of the panic attack, I came in and called my husband and told him I had to get some help. This was not the example I wanted to set for my daughter or any of my kids. What kind of Mother could I be if I let this control me?
I found the BDD program at MGH and called. They talked to me right then. I didn’t have to wait for someone to call me back. This was huge for someone feeling like they were losing their mind. At the end of the conversation, I had an appointment and I had some hope.
The program was very helpful. At first I was a little skeptical. I was totally convinced of my issue and held firm to that belief. I did 4 months of therapy. I had very sensitive and caring people that were very interested in seeing me succeed and get better. The environment was always warm and nurturing. At the end, I had a renewed sense of worth and an armful of tools to help me cope in the future. I also know I’m not alone. Even though I’ve completed the program, I know they are there in the future if I ever need help.
The best part of this was that there was a diagnosis, a sense of validation that I wasn’t losing my mind. I wasn’t alone. BDD is real and affects so many. I had a real condition but it was / is treatable.
For anyone out there who is suffering, I beg you to make that call. There are people out there that care and want to help. This program is one of those places. Make the call that can give you your life back. It’s worth it.
A poem from a patient
Thoughts of New
Finding comfort beneath sadness wasn’t so hard,Since my heart and my body so far apart, The war becomes a fight, Endless thinking matching an endless night, This world can self destruct, Lingering in our heads of bad luck, Our hearts hiding in our sleeve,Our own soul decides to leave, This will not take over,Us without beauty will make us sober.