December 8, 2011.
During 2011, 237 letters were received by the Canadian Institute for Obsessive Compulsive Disorders from OCD sufferers and/or their families from across Canada. These letters describe very serious difficulties in accessing treatment for OCD that is specialized, timely, and sufficiently intense and sustained to optimize symptom resolution and maintenance. Many letters are heartbreaking pleas for help. Some letters are recovery experiences shared.
Canadian consumer responses to the CIOCD have been appreciative. Every letter is carefully read and receives an individual response.
Enclosed are a few representative letters reproduced in this document with written consent. With one exception (JS) these are from Canadian parents or sufferers.
Dear Dr. Sookman,
A few weeks ago, I received from a friend studying at McGill an e-mail about The Canadian Institute for Obsessive Compulsive Disorder. I was struck by what you wrote about treatment resistant patient, it was a little light in the dark, our darkness. Our youngest son has been battling with what we now know as OCD since the age of 4 years old. We started seeing “specialists” when he was about 5 years old. Many wrong diagnostics later, he was diagnosed with severe OCD at age 12. He is now 14 years old.
In the last two years, several medications have been tried and along with the medication, a general CBT therapy has been started. Our son was even hospitalized for a few months to emphasize the therapy. This was a year ago. Today, after a difficult withdrawal of his last medication which had dangerous side effects (heart and liver problems), after trying another medication in replacement with no effects on his OCD and yet again dangerous side effects (digestive problems causing anemia), after our son’s decision to interrupt his therapy because of his physical condition and little progress in controlling his OCD, we are told that his case is desperate.
As parents, our only wish is to see our son get better physically and mentally. Yet now, with all that our son has endured in the last years, we are puzzled by the situation. Needless to say that our son is exhausted and is convince that for now he is in no condition physically or mentally to start again his therapy and in no condition to live through again the harsh conditions of an hospitalization in a mental institution, our son is almost convince that his situation cannot be changed.
We would like an expert opinion of the situation, please shed a little light in our darkness. We can’t possibly accept that at only 14 years old, our son’s situation cannot be improved considering his high intelligence and great personality.
L and P,
parents of D
Dear Dr. Sookman,
I was wondering if you could help me. My 17 year old son Jesse was diagnosed with OCD about two years ago in Ontario. My son was severely disabled by this condition and went from a happy, healthy normal child to a very ill child very quickly.
He was hospitalized for 10 days and they continued therapy with him as an out-patient for another 3 months. He was put on medication for his condition Sandoz Fluoxetine(60mg) and PMS-Risperidone(1mg) and he has been on these medications since. My son lost a complete school year due to this illness and I am afraid he may lose another year at the rate that he is going. After his hospital care he was given cognitive therapy once a week from there on. I found the therapy and the medication very helpful for him and he has continued to improve but it is quite obvious that his progress is very slow going. This pastsummer his therapist came into our home and did a flooding treatment for four days. I found this treatment helped my son immensely but it wore off as time went on.
I realized at the time that is what he needed to get healthy… some kind of intense therapy. My son had many issues with items in our home… not wanting another person touching certain items in our house. Many of those issues were targeted in this flooding treatment and today he does not have a problem with these issues. However, other things seem to just come back and continue to bother him. My son’s other big problem was that he stopped using his left hand around April. The therapist addressed this and had Jesse use his left hand in our home. It seemed to work for a while but since the treatment he slowly went back to not using his left hand again.
My son wanted to move back home to British Columbia so I decided to move him back here in hopes that it would help his condition. Last year he was home schooled and this year he is transitioning back into a secondary school here in BC. The transition has been extremely difficult for him and it is very difficult getting him to school every day. He is always tired and he finds it physically difficult to do a full day in school. I am very concerned that my son will lose another year of school due to his poor attendance and grads. Prior to this illness my son was a “B” student with good academic and social drive and now that is gone. I have recently set up an appointment with a BC Children’s hospital to get him more support and help with his condition but he will not be seeing a doctor until January.
I did some research on the internet regarding OCD and came across your website. I found your website very helpful and that is why I am writing to you. The health care professionals that we have dealt with so far have been very good but I feel he needs more. I feel a one hour session is not sufficient in helping him through this. I am very concerned the longer he struggles with this the deeper the pathways get in his brain and the harder it will be for him to get healthy again.
He is still dealing with many quirky OCD behaviours but the major one is that he is still not using his left hand. The simple task of zipping up his backpack or eating a sandwich at lunch time he will not do because he does not want anyone to notice him not using his left hand. He has recently started eating food with a napkin, what he calls a barrier, so this is why he will not eat a sandwich at school. Heis very sluggish and lacks the energy that he once had. My son is now dealing with acid reflux and is throwing up daily. This has just recently started and I am not sure if this has anything to do with the OCD and nerves or if it is a completely separate issue. I have taken my son to the doctor a couple of times concerning this and the doctor has prescribed Tecta pantoprazole magnesium.
Another reason why I am writing to you today is your, “message from the president”. Since moving back to BC, I have reached out to previous friends to ask for support and as soon as I describe some of Jesse’s problems they have stopped contact. People are unaware of how bad this illness can be. If it wasn’t for celebrities coming forward with their experiences the mass population would not have any understanding at all. I understand how my son wants to keep it quiet and not tell anyone due to the alienation. What upsets me most is that my son is so logical for his age and has other parts of his life together unlike some teens and he is as sane as anyone else but people cannot understand this. The lack of public awareness is the most damaging to a person with OCD.
I apologize for the lengthy email but I feel there is so much pertinent information. I was hoping you could give me some guidance about who I could contact that could help my son. The more I learn about this illness the more concerned I get because the longer he avoids the areas that bother him the harder it will be for my son to live a normal life again. My son has dealt with this condition by avoiding the things that give him stress since the start of treatment.
I am currently in school myself in college completing a college diploma so I don’t have very much money to go to a private practice to give my son additional therapy. Are there any avenues that you could suggest to help my son? I suspect that my son could have gotten OCD through PANDAS considering how it hit him so suddenly and how his symptoms came on him in wave like manner. I have done some reading and have read that antibiotics could possibly help with this. The doctors have never recommended this so I am not sure if it is a possible treatment? I was also wondering if there are any new types of treatment that is cutting edge that might help him.
I can’t tell you how grateful I would be if you could take the time to
help my son and me.
Hello Dr Sookman,
A couple of months ago I read an article in McGill’s news-feed concerning the work you’ve been doing to increase awareness of effective treatments for Obsessive Compulsive Disorder. This touched a nerve with me; as a child I suffered from OCD, but thanks to CBT I underwent at the Hospital for Sick Children in Toronto, I have been asymptomatic, without medication, for the past 7 years.
I’m currently a third year Neuroscience major at McGill, and am strongly considering applying to medical school this upcoming fall. To that end, I’m wondering if there is any way I could follow around (and help out) some of the doctors at your clinic, in order to both get a better understanding of the profession and see whether it would be a good fit for me, and also to do my part in helping sufferers of OCD get the treatment which I found so life-changing.
If this is a possibility, I’d love to hear from you. I’m able to volunteer during weekdays.
Dear Dr. Sookman,
I am writing this note in the hope that communicating my experience may be helpful to others, and again to say thank you.
At about 11 years old, I remember my OCD beginning with disturbing involuntary thoughts. I would worry that I would harm or kill someone. I also feared that I would harm myself or kill myself. It was never that I had any desire to actually follow through with any of these things, I just obsessed over the fact that I could. These thoughts scared me immensely and I began to feel the compulsion to express them to my mother whenever they entered my mind. Because I knew by my own rules, I would have to tell my mother about all these thoughts in order to alleviate myself from the discomfort they caused, these thoughts became increasingly disturbing and embarrassing.
Shortly after these first symptoms of OCD presented my rituals began. I experienced what I learned later was called, ‘Magical Thinking.’ I felt/believed that by performing certain rituals, I could control both the world outside of me as well as my own emotions. I carried out rituals associated with two main fears: that something catastrophic like death would happen to my family and that this would be my fault and I would be devastated if I resisted my rituals; and that I would lose who I was as a person. At that time, my father had recently suffered a heart attack, my uncle had recently passed away of cancer, and in my emotionally vulnerable state as a result of all the thoughts and feelings I was experiencing, I was often ostracized or teased at school. Looking back, this sense of loss and loss of control was related to my creating an inner world in which I did have a sense of control, a world where I could feel safe.
I then began to have intrusive thoughts and anxiety that my rituals or ‘powers’ could escape me and attach themselves to inanimate objects or other people. I would have to touch many objects certain numbers of times (based on specific calculations) in order to ensure I retained the control/power to ensure my family was safe, my father in good health, etc.
My intolerance of uncertainty and anxiety just kept getting worse and were just too much for a child to cope with. I could not resist the urges I felt all day long to do my rituals to relieve my anxiety, my numerous rituals quickly took over the vast majority of my mind space and pervaded every aspect of my life. So much energy was focused on my OCD and the anxiety surrounding it, that I was not able to focus on what a normal 11 year old should focus on, such as school or relationships with my friends and classmates. My life felt intolerable, I felt a terrible loss of self-confidence, feelings of depression, and growing avoidance of activities. I thought I was losing my mind, would need medication, that what I had was incurable and would be with me in some form always.
One evening we were watching television and a special about OCD came on. I apparently turned to my mother and said ‘Mommy, I have that – that’s what I have!’ My mother knew about my abnormal behavior, as I told her everything, but it was when this special came on TV that this problem become more real. With this we had a name, and it was then that both she and I knew I had OCD. She immediately arranged for me to be seen by a psychiatrist who diagnosed OCD and referred me right away for specialized treatment to Dr. Debbie Sookman, the Director of the Obsessive Compulsive Clinic at the McGill University Health Center.
I will never forget the first time I sat in a chair across from Dr. Sookman feeling uncertain about what was to come.
I was nervous, I felt hopeless, and I was afraid that this stranger sitting in the seat facing me was going to try to take something away from me, something that made me feel special and secure. I look back now to that experience, that day, and marvel at the complete and utter distortion of these beliefs. Of every misconception I ever had throughout the course of that disorder, of every illogical ritual, or every irrational fear, the greatest misconception was the one I had in that office that very first day. I thought something was going to be taken away from me, when in fact I ended up getting more than I could have ever asked for, my life back.
I recovered completely following specialized treatment with Dr. Sookman. When I expressed my profound gratitude, Dr. Sookman replied that it was I who had the resources, I who was able to make use of the specialized strategies, and I who resisted the intense urges to ritualize and associated anxiety until they subsided in a healing way. But, it’s obvious to me that this would not have been possible for me without the specific strategies I learned, and found the courage to use, from my therapy experience with this expert professional.
I have been symptom free for 13 years now, and am fully functional at age 25. Two years ago, I made a decision to go back to University, this time in the field of Psychology. There I earned a membership to the Golden Key Honours Society and the ‘2010-2011 Campaign for a New Millennium Student Contribution Scholarship’ for outstanding academic achievement. Today, I am looking into graduate programs, so that I can eventually earn my doctoral degree in Psychology. I plan to specialize in OCD. The gift that Dr. Sookman gave me is one I plan to continue giving others who need it.
As you can imagine, this is a cause that is so close to my heart and one that I support so completely. If anyone understands the need for help in this specialized field it is me. Fortunately, I was one of the lucky ones who promptly received expert help and as a result was able to overcome this disorder. It is an obstacle that is possible to recover from for many sufferers when optimal help is available.
I know so many people who have not been as lucky. Suffering from this debilitating disorder is prolonged or worsened because there are not nearly enough OCD specialists or resources. Any family that has a helpless child suffering from OCD, or any loved one, desperate for expert help but unable to access it knows what a tragedy this is. It is obvious to me that Canada urgently needs The Canadian Institute for Obsessive Compulsive Disorders. I know that I am not alone in feeling deeply grateful to Dr. Sookman for establishing the CIOCD.
I am now volunteering two full days a week of my own time because I trust that The Canadian Institute for Obsessive Compulsive Disorders – the specific vision, the collaborating professionals, and the processes underway and planned – will help to improve the clinical situation for Canadian OCD sufferers. Please become involved with us!
Hi Dr. Sookman,
I just want to take a moment to thank you for all you have done (and all you plan to do!) in advocating for OCD awareness and proper treatment. It is so exciting to read about all of the plans for the CIOCD.
I am an advocate for OCD awareness as my son recovered from severe OCD several years ago. He was so ill he could not even eat. Like most families, we floundered and fought our way through a disorienting maze of treatments and programs, desperately trying to find the best help for Dan. We went from seven therapists to ten medications to a nine week stay at a world-renowned residential program. Thankfully his story is one of triumph, and I credit ERP Therapy with literally saving his life.
As far as my son Dan goes, he diagnosed himself (with the help of the internet) at the age of seventeen, though he told us he had symptoms for a few years preceding the diagnosis. My husband and I noticed no symptoms at the time as most of Dan’s compulsions were mental. Once he told us his secret we took him to his long-time pediatrician who confirmed the diagnosis, prescribed 10 mg of fluoxetine, and referred him to a local therapist (Doctor #1). This therapist, we later found out, had no idea how to treat OCD and used traditional talk therapy, which only made matters worse for Dan.
Things got really bad for Dan at the end of his freshman year of college. He was fifteen hundred miles from home and when I flew down to be with him because he did not sound well, I was shocked at his condition. He had literally not eaten in a week (he was then hospitalized for dehydration), would be stuck in certain places for hours at a time, could not enter most buildings on campus, and had totally isolated himself from his peers. On top of all that, he was self-injuring. We connected with a psychiatrist immediately (Doctor #2) who increased his fluoxetine dosage and gave him Abilify, which Dan would not take.
We were luckier than most people as we have a friend who is clinical psychologist who referred us to a world-renowned intensive residential program, where Dan spent the summer (nine weeks). He so wanted his life back and was totally committed to his ERP Therapy, even though it gave him panic attacks. He connected well with his behavioral therapist (Doctor #3) there and also saw a psychiatrist (Doctor #4) who prescribed additional meds for him. I totally credit this program and ERP Therapy for saving Dan’s life…
OCD turned our family’s lives upside-down. I knew little about the disorder before it affected my son, and most of what I did know was incorrect. There were times I wondered if Dan would ever be able to function again in society, or even worse, survive. The one thing that kept me going through this whole ordeal was having a friend who is a clinical psychologist telling us that Dan would be okay. He knew OCD was treatable and that there was so much HOPE for our son.
As you know, not only is there a shortage of therapists trained to treat OCD, some therapists are not even aware of ERP Therapy. And of course there are so many of those with OCD out there, along with their families, who are suffering needlessly, either because they are not aware they are dealing with OCD, are not being treated properly, or can’t afford proper treatment.
Thank you again for all you do. If there is anything I can do to help you get the word out there, I would be happy to. I’m American, not Canadian, but in my mind, we are all in this together!
Best of luck and thank you again,
Warm regards, JS