by Chandler
This story is part of our blog series called “Stories from the OCD Community.” Stories from the community are submitted and edited by Toni Palombi. If you are interested in sharing your story you can view submission details at www.iocdf.org/ocd-stories.
Like many people in the world, I struggle with obsessive compulsive disorder (OCD). I was first diagnosed with OCD by a doctor when I was 11 years old. My OCD made it hard to go to school and live my life as I lived in constant fear. After trying many different medicines, a perfect combination was finally discovered; this enabled me to live my life with minimal OCD interference until I graduated high school in 2014.
During my first year of college, my OCD worsened despite the medication. I engaged in typical washing rituals, taking up to five showers a day. For almost a year, I performed OCD rituals every day. No medication was helpful during this period.
Eventually, my parents helped me to find Rogers Behavioral Hospital where I was admitted to outpatient therapy. This helped to control the OCD for a while; however, after some months, the OCD once again worsened. I was missing classes at university and calling in sick to work. My compulsions took over my life: I washed my hands and arms so much that my arms looked like fish scales; my fingers were so dry I could not bend them without breaking skin. I slept all day and even took sleeping pills to fall asleep as this was the only way to not perform the rituals. I could no longer keep up with my studies and had to defer for two semesters.
I attempted suicide twice during a two-month period. After my second suicide attempt, I spent a week in an intensive care unit; during this time, I agreed to get help. Shortly after, I was admitted to a residential program at Rogers Behavioral Hospital.
During the residential program, I came to realise how many others were suffering just like me. I was fortunate to receive treatment by amazing doctors and therapists and meet other wonderful residents whom I shared a house with for five weeks. I am still in contact with most of them through social media. I became best friends with one of the women my age. We talk to each other every day. She is my best friend and one of my biggest supporters. The residential program changed my life as it has for many people with anxiety disorders.
For the following two years my OCD was mostly under control, enabling me to function. However, it then began to flare up again; at this point, my parents contacted Gerry Radano, the author of Contaminated: My Journey Out of Obsessive Compulsive Disorder. The author, who underwent gamma knife as treatment for her OCD, suggested we look into brain surgery.
Consequently, we contacted Butler Hospital (OCD Department) in Rhode Island and submitted all my medical records, prescription history, and all the necessary information to meet the criteria to be considered for surgery. This was an extremely lengthy process (one year) and the criteria was very strict. After speaking with doctors who assessed my case, they suggested a new form of surgery for OCD: laser ablation — a minimally invasive surgical therapy. I was the first patient in 2019 to have the surgery.
Post surgery, my OCD is very much under control and I feel like a different person. I am now a senior at my university and plan to work as an art teacher after graduation. I would not be writing this if it were not for my family, the staff at Rogers Behavioral Hospital, the doctors at Butler Hospital and a great neurosurgeon. I am so grateful to Dr Greenberg and Dr. Mclaughlin from Butler Hospital for their tireless dedication to OCD research.
Chandler lives in Florida, where she attends university and works part time. Details of her OCD journey can be found via her Instagram account: warriorsofocd.
Thank you for sharing, There is power in knowledge an by sharing your journey it helps give a glimmer of hope to another OCD sufferer to never give up. An to their families. I pray for your continued success.
With warm hugs and gratitude !
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Chandler, I am so happy for you. I am a 63-year-old man now who has suffered from much the same aspect that you have, but back in the 60’s when the onset of this devasting illness started there was nothing at all not even a name. How I have managed to live this long with it is simply unexplainable. Like you I have had thoughts of taking my own life, but out of fear I have not. I am so glad that you have finally found some peace it is encouraging for me even at this age. Thank you for sharing
Richard, I’m right behind you at 59 years old. This disease has taken most of the joy from my life. And I like you have had many thoughts of ending my life but I fear mostly for my eternal life which stops me. Curious if you have had any success with ERP or medications? I too am encouraged by Chandler’s story.
Chandler Thank you for sharing your story with us you are one of the strongest women I know I am her for you always
Chandler,
Your story is truly inspiring. I suffer from sever OCD to the point that it affects my work, relationships with family and friends, and the ability to live an every day normal lifestyle. I have had OCD from a very young age but it was never diagnosed because I never told anyone. In the last two years, it has been significantly worse. I’m not sure if it has anything to do with a brain surgery I had almost 3 years ago. I’m not on any medication of therapy for it but I want to be because I cannot go on in life living like this. Your story inspired me that I am not alone in this. Thank you.
I have had OCD since the age of 6 or 7. It is Fear OCD. At the age of 14 or 15 it came to a point were I was noticing these thoughts that upset me. this was around 1967. At that time I went to a guidence councilor in our small town. After 3 or 4 months it subsided and I felt better. I was not diagnosed with OCD until I was 37. I have been relatively free of symptoms on and off for 20 years. Recently I have had a flare up. I am working at getting better. I see a physicians assistant and psychologist for the last 6 or 8 months but still have anxious moments about my thoughts. I will keep a positive attitude and continue to work on it. I find exercise helps.
That is amazing , I’m a severe sufferer off ocd. Had all treatments many times am currently having deep tms in London it is definitely helping , I would really like to have gamma knife surgery aswel but no where in the uk does it privately or on the nhs for ocd , any feedback will be great Thankyou
Hi Graham,
Thank you for your comment. Please contact our resource specialist at info@iocdf.org and she’ll be able to help you.
I’ve been suffering from severe ocd for 10 years. To the point where I can’t even move. I get out of my bed maybe for an hour of the day. Used to be 3 hours every 11 days. Tried all meds, tried CBT + exposure therapy. I need help. But it’s difficult to find help.
Someone please help me. ocd3@sudomail.com
Hi Aj, Thank you for sharing and I’m so sorry to hear about your struggles. Please contact us at info@iocdf.org and our resource specialist will find you some help.
Hello Price!
I have contacted this discussion from Europe, Finland. But my email post seems not to be here. Could you, please, say me whether I’ve posted it correctly?
Hi Timo,
You are posting correctly!
Richard, I’m right behind you at 59 years old. This disease has taken most of the joy from my life. And I like you have had many thoughts of ending my life but I fear mostly for my eternal life which stops me. Curious if you have had any success with ERP or medications? I too am encouraged by Chandler’s story.
What criteria are checked to allow for a surgery. Can it be done on a 14 year old child.
Hi Chandler-
Thanks for sharing. My college age son has severe OCD, has tried all the meds, etc and we are now considering surgery. If you have time, I would love to get more info via email – things like before/after, how you picked Butler/surgeon, 2nd opinions/others surgeons, did you consider DBS, etc?
I’m a mental health counselor working with a client who has severe OCD. She has been in treatment with a counselor at NOCD using ERP. My work with her is primarily supporting her as she is receiving that treatment. Her primary obsession is fear of being poisoned so she has not been able to take an antidepressant for the past year and she is not eating much food. Her fears extend to fear of having her hair colored, and many other sources of possible poisoning. We have begun exploring other treatments such as dTMS and surgical treatments. She is extremely debilitated and has suicidal ideation often. Any help or recommendations would be appreciated!
Timo Kallioaho
Hi you! I live in Europe, Finland. I can’t guess how many of you know this country. But my OCD history:
I got the first symptoms during my university studies at ’80ties (about in 1983). I had then “a race” between my OCD and studies, and OCD won. It meant that I couldn’t write my Master’s Thesis – I had to serach for help in a psychiatric hospital. But at that time, OCD was not known and my stay there in the hospital took 6 years until I met there a new doctor who knew the neurosurgical alternative (capsulotomy), but it was not possible in Finland, I had to travel to Stockholm, Sweden, for that. I got so much help that I now e.g. don’t have to wash hands extra. Could some one answer this message for discussion? Despite the operation, I feel alone here in Finland.
Hi Timo,
We’re sorry you’re feeling alone. Please know you aren’t alone and that there are resources out there for you. Here’s a link to our support groups page: https://iocdf.org/ocd-finding-help/supportgroups/, we hope you can find something there.
Timo, I’d love to talk with you. So glad you no longer struggle with the hand washing. Curious if you are completely healed from OCD.
Hi!
I contacted this discussion one or two weeks ago (I don’t remember exactly). I just wish you all STRENGTH in your struggle for a better future with OCD.
I’ve undergone an operation which helped me a lot (e.g. I don’t need to wash hands more than people usually do).