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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.

Obsessive compulsive disorder (OCD) is treatable and I am living proof.

Now 34, I have endured OCD since high school, including three major episodes coupled with depression and suicidality.  I know what it’s like to believe recovery is impossible. Waking up to face another day of on-going automatic thoughts is horrific.  I’ve spent years besieged by intrusive thoughts where sleep was not even an escape. The anxiety kept me awake and this only made the cycle of torture continue.

OCD is better understood today than it was 15 years ago when I first began to visit different doctors and psychologists to explain my symptoms. And even then, the symptoms I experienced were difficult to associate with a specific disorder:  upset stomach, rapid heart-beat, inability to concentrate, blurry vision, constant fatigue, inability to sleep, racing repetitive thoughts, and no longer finding enjoyment in activities which once brought me joy. Due to this, none of the specialists I saw diagnosed me with depression or OCD.

Though the OCD and depression remained undiagnosed, it continued to impact my life.  While at college, I had to take a year off as I experienced frequent panic attacks and could not think straight. Trying to study while being flooded with anxiety was impossible. Any place I had a panic attack I would thereafter avoid which only made the problem worse. It was frightening as I had no idea what was wrong with me, and medical professionals were unable to diagnose my condition.

When I tried to explain what was going on in my head, many people thought I was either joking or making it up. Some people even laughed.  As I did not have outward visible compulsions such as hand-washing (which is commonly associated with OCD), it made it harder for people to understand.

When I completed college and was preparing to enter law school, I experienced another year of obsessive thoughts and depression. Though I still had not been diagnosed, I took the initiative to attend a program at Mass General Hospital (MGH) for OCD, and finally I realized that this was in fact what I was suffering from. At MGH I learned about exposure and response therapy, which is effective for treating OCD; it helped me tremendously. I would write my thoughts on paper or record them. Reading/listening to them over and over bores the brain by making you confront your fears instead of avoiding them. After a year of therapy and the right medications, I returned to work. With a desire to pursue a new career, I also began attending night classes.

Though I have made progress with managing my OCD, it continues to be a part of my life. Recently, because of OCD and depression, I had to take a leave of absence from my job.  During this time, I endured two stays at McLean Hospital’s acute unit, each time for a period of two weeks. I attended their OCD program and again confronted my fears with exposure and response therapy. I was certain the only way out of the hell of my repetitive thoughts was to kill myself; but I hung in there because I knew if I did kill myself, I would have hurt those closest to me.  I began electroconvulsive therapy for depression, which I found extremely helpful. From my personal experience, I feel that I had to first treat my depression in order to treat my OCD.

OCD is like having two brains: a “normal” brain and an OCD brain.  Think of OCD as a separate entity; you are not your thoughts. People with OCD have the same thoughts as people with “normal” brains, but our brains get stuck in an uncontrollable loop we can’t stop. It is uncontrollable because no amount of reassurance from someone else or self-rationalizing will help.

Understandably, it may be hard for people to fathom unless they have experienced something similar. Imagine if someone says: ‘try not thinking about a pink elephant for one minute.’ Of course, it is very difficult to not think about a pink elephant. Now, imagine instead of a pink elephant, it’s a thought that makes you feel startled or scared all day long. Combine those feelings with a sadness so deep, you don’t want to wake up anymore.

I believe that it is a waste of time and energy explaining your thoughts to people who refuse to understand; it is much more useful to talk to a therapist who understands OCD and wants to help. I was lucky to find a good therapist through the International OCD Foundation website.

OCD waxes and wanes over a lifetime, but life is worth living and it can get better with treatment.  If you believe you have truly reached rock bottom, please don’t ever give up. Seek the help you deserve. I did and I’m still here.

Jonathan is a web developer living in Boston, Massachusetts.  He wants people to know that no matter how horrible they feel, they can get better.

42 Comments

    • Zejna Halilbasic

      What a great article and I am so happy for you! I also suffer from ocd thoughts and I am really desperate.
      It is a great tip to record yourself and listen to it, I did immediately and will listen to it every day. Is there anything else you can recommend to do? I feel so hopeless, I really want to change my situation. One more question can ocd be cured? Are you completely symptom free today? Please give me some hope. Thank you so much in advance!

      Reply
      • Jonathan

        OCD can’t be “cured” but I believe if you stick with ERP it can come pretty damn close. ERP takes time and recovery is not linear. I have ups and down in my recovery. However, in my experience, I have habituated to every intrusive thought I’ve suffered from, and there are many. I can go weeks/months without them popping up and when they do, it’s a blip on the radar and it’s gone.

        It’s not easy, you have to do the homework. Everyday for an hour I’ll listen to my recording until I habituate. I wish I wasn’t like this and have felt hopeless, but OCD is definitely treatable and exposure response prevention does work if you invest the time.

        I’m not symptom free, but pretty damn close and I can say my life is better having been through this shit. It made me appreciate things more. I wish I didn’t have it, there’s nothing fun or cute about being OCD. Hang in there.

        Reply
    • red rob

      Thank You, Johnathan. It helps a lot already knowing that I am not alone… Pure OCD has been tormenting me, too… I am on meds for depression (with anxiety) and borderline personality disorder. The struggle is continuous and I learn significantly through my psychotherapy.

      Reply
      • Hi Rob,

        Yes, I don’t have outward compulsions either, mine are mental. I’m still practicing ERP and challenging OCD everyday. Hang in there.

        http://webeatocd.com

        Reply
    • Holly

      Hi I have a question- my husband was diagnosed with OCD and has many different subjects or themes. He doesn’t seem to be affected greatly by them as it’s been 3 years since the diagnosis, he still is not treated and has no desire to do erp. I get more anxiety about the thoughts in his head than he does.. and there is this thing in me that was a sureness that is it just thoughts and not him.
      The other day when talking about sexual thoughts he has I asked him like will he ever do these and said who knows if I’m 10 years you are doing these bad things, and he said who knows in 10 years there’s never a 100% about anything and this really freaked me out because I know 100% I will not be harming someone or hurting someone sexually or something absurd. Then he went back and said it was a bad example- but I don’t know how to handle all these very scary thoughts he has and that comment seemed really weird to me. What do you suggest?

      Reply
      • Holly

        I don’t want to be a judgemental spouse. But I also get scared by the thoughts in his head and it’s hard for me to know if it’s 100% ocd does that make sense?

        Reply
        • Jonathan

          If he has been diagnosed with OCD by someone reputable, then I’d say it’s OCD. The asking if you or him would do this or not do these things is anxiety and OCD. Reassurance seeking is an OCD compulsion. I would really recommend he talk to someone about exposure response prevention with a OCD specialist, not just a general psychologist. If he hasn’t already, a psychiatrist for medication. ERP can be scary at first, but it is the gold star for OCD. People with OCD have thoughts about killing their kids, it doesn’t mean they are going to do it.

          Reply
        • Ben Shaun Brader

          Hi I’m ben 34 and recently do to the stress of lock down my mental health has taking a turn for the worst . I’ve started to get persistent intrusive thoughts and I’m finding it hard to control them and it’s making life very difficult for me at the moment. I’ve had intrusive thoughts couple years ago and managed to get rid of them but I’m not sure how . These thoughts are sexual intrusive thoughts around certain people and sometimes anyone and it makes ne feel disgusting . I have health anxiety at the moment really bad and would appreciate anyone’s advice or help . Many thanks ben

          Reply
          • Jessica Price

            Hi Ben–I’m so sorry to hear of your struggles. Please contact us at info@iocdf.org so we can get you support.

  • Sarah Laubinger

    Jonathan is living proof that as awful depression and OCD can be they are not insurmountable. As a society we have not done a very good job understanding how dihabilitiating depression and OCD can be. I believe Jonathan is here to help share his story of how little by little a person suffering can overcome the pain and confusion he’s felt for most of his life. I also feel very strongly that his suffering has been deep but not without purpose. In every tragedy, there is triumph and something to be learned. For me, I’ve learned from his experience and want to encourage other family of loved ones suffering from depression to leave judgement at the door, and put to work what mankind was intended to — which is to liove without condition or prejudice. Jonathan is more brave, bright and brilliant than most — he deserves everyone’s love and respect so he can do all of the great things I know he’s capable of … XO

    Reply
  • Amanda Guarino

    This is a story much like my own, and strangely enough I also live in the same area as the author. It’s refreshing to see that someone else has gone through, and is still going through the exact same thing as me.

    Reply
    • Jonathan

      There are a lot of people with OCD out there, and thankfully it is more understood today than in the past.

      Approximately 2.3% of the population between ages 18- 54 suffers from OCD, which out ranks mental disorders such as: schizophrenia, bipolar disorder, or panic disorder. In the U.S., approximately 3.3 million people have OCD,

      Reply
    • Hello Jonathan,
      This is Aditya from India. I was diagnosed with OCD. I became sure about this after consulting a psychologist and a psychiatrist. From the very beginning I used to have unwanted thoughts like sexual thoughts related to my family members and I would think does this make me bad.
      OR mostly what if thoughts ..due to this my thoughts would engage in constant chatter at night and I’ll feel very disturbed and fearful. It’s mostly mental obsession since I don’t Have outward compulsion.I would try hard to assure that it’s not the case my thoughts are telling me here…Like if I hear a song some lines would start playing in my mind and a strange fear would accompany it..As I grew up every day I tried to assure that I am not crazy or having any mental disease but I’ll end up searching on net. Only till another thought pops in my mind and thus never ending loop of thoughts. From starting only my dreams were something to do greater in my life..but knowing I have ocd it feels like I can never fulfill them..Also I told my bhaiya since I trust him the most and he did take me to a psychiatrist and psychologist but still he feels that it’s just very normal and I am getting little high on thoughts..
      I know life is difficult and with ocd it’s somewhat more but still I want to live..I don’t want to be crushed within my own thoughts.. please help…

      Reply
      • Jessica Price

        Hi Aditya, thank you for sharing your story, and I’m sorry to hear about your struggles. Please contact us at info@iocdf.org so we can connect you with resources.

        Reply
  • Brigit Rotondi

    Thank you Jonathan, The ocd you describe sounds alot like what I go through. It is very difficult at times. The worry thoughts are so hard to just accept and let go of. What has helped me a bit has been dialectical behavior therapy and skills practice. Also removing myself from situations . I do get discouraged with treatment and coverage. This has been a major feat with me. Can I ask how you dealt with it? I have found a great therapist but not able to find a Dr. What other advice would you give someone going through similar? Thank you, B

    Reply
    • Jonathan

      Hi Brigit,

      I’m not entirely sure what you mean by coverage? You can’t find a psychiatrist?

      The best things I can recommend is exposure therapy, over and over and over. I record my obsessions and listen to them repeatedly; sometimes it takes months. It’s not easy or fun, but I’d rather not live with OCD. OCD is my worst enemy and I do everything I can to improve every day. I too get discouraged some days, however, I persevere.

      The harder thing to do and the right thing to do are usually the same thing. Stick with a program, do daily ERP; the best way out is always through. Some books I can recommend are:

      1. The Imp of the Mind: Exploring the Silent Epidemic of Obsessive Bad Thoughts
      2. Freedom from Obsessive Compulsive Disorder: A Personalized Recovery Program for Living with Uncertainty
      3. Daring to Challenge OCD: Overcome Your Fear of Treatment and Take Control of Your Life Using Exposure and Response Prevention

      Reply
  • Diana Brown

    Thank you Jonathan. My son has OCD and this helps me so much. Every day is a new day!

    Reply
    • Jonathan

      You’re welcome. I hope he gets better.

      Reply
  • Christine Dimoulis

    Thank-you for sharing this awesome article about your struggles and explaining your OCD/depression with me. I now have a greater understanding of what you have been going through. I am so proud of you Jonathan. Your perseverance and determination to keep using exposure and response therapy so you can face each day is well stated as a working therapy. I admire your commitment to face the OCD/depression using the tools you have learned to keep moving on in-spite any possible set backs. I am glad you know you are loved by so many and you add life to us in ways you have no idea. I see you helping others with OCD/depression as evident with the responses to your article. Thank-you so very much! Love you, Christine

    Reply
  • Becky

    Your experience sounds much like what my son is going through. He to has been diagnosed with significant OCD/anxiety/depression. I know he would be very interested in learning techniques like exposure & response therapy to combat his negative thoughts & anxiety. Is it possible for you to provide contact info for the OCD programs at McLean & MGH? Thank you & I wish you well.

    Reply
  • Kishore kr. Lakhani

    Yes we have no other option other than cbt and acceptance

    Reply
    • Jonathan

      Yes, and they work along with medication and practice.

      Reply
  • Emma

    Hi Jonathan,
    my name is Emma. I am only 15 years old and I suffer tremendously from OCD, depression, and anxiety. I hate myself for having these thoughts. For 2 years, I’ve been confused and alone, not knowing what was wrong with me. I researched my symptoms when I was 12, but never found anything sufficient or matching to what I was dealing with. The worst part that I ask myself is: will I ever have a normal life again? I’ve also had many suicidal thoughts about my life, and if it is still worth living. I still haven’t told my parents or therapist about my problems, but I plan to, and your article has helped me put in the effort to do so. I now realize that I’m not the only facing this everyday. Do you recommend anything I should do?
    Thank you for your help.
    -Emma

    Reply
    • Jonathan

      Hi Emma, thanks for the question. I would recommend speaking to someone who you believe would be receptive and non judgmental. That can be a family member, friend, or even a teacher. If you live around Boston the best OCD specific therapists are at Mass General Hospital and McLean Hospital.

      I also thought suicide was the only way out. It isn’t. I live a “normal” life where long periods of time go by without any obsessions. Find the right therapist who knows about OCD and with hard work you can get better. The treatment works if you put the time and effort in. If you have any other questions please feel free to ask.

      https://www.mcleanhospital.org/ocd
      https://www.massgeneral.org/psychiatry/services/treatmentprograms.aspx?id=2022

      Reply
  • Nicole

    Johnathan I’m worried saying my horrible thoughts over and over again will just keep the thoughts alive?! How does saying them over and over work?

    Reply
    • Hi Nicole, saying the thoughts over and over doesn’t keep the thoughts alive, avoiding them keeps them alive. Try not thinking about a pink elephant and all you can think about is a pink elephant.

      Exposure and response prevention is the cornerstone of OCD treatment. Trust me, it works. I would read about ERP online and there are some good books about it on Amazon. If you are scared about beginning I would find an OCD therapist in your area. They can start you slow.

      Daring to Challenge OCD: Overcome Your Fear of Treatment and Take Control of Your Life Using Exposure and Response Prevention by Joan Davidson is a good start.

      As long as you avoid the thoughts, try not to think about them, or ask for reassurance they won’t happen, you won’t get better. It’s just OCD. You have a brain glitch as do I.

      Reply
    • Carmen

      Do you take medications?

      Reply
      • Jonathan

        Yes, specifically for OCD I found Lexapro very helpful and Lamotrigine for depression.

        Reply
  • Lexi McLaughlin

    My 9 year old son has extremely intense OCD and we are FINALLY on the right path to manage it. Luckily we recognized it quickly as my husband was held captive by his “OCD brain” without an outlet to understand/help for over 25 years. I have been the main coping mechanism for both at times through verbal affirmation of their thoughts but truly cannot comprehend this stuggle… strong seratonin in me i guess. But we are working hard to “ignore our OCD friend” at times!

    Thought starter… I WELCOME response: My son makes PERFECT rhythms with no effort. Whether tapping his hands or “beat boxing” which he LOVES. HIs rythms are complicated, intriguing but extremely symmetrical and dance-worthy 🙂 Does anyone have a more formal outlet for this rhythmatic coping mechanism? We’ve tried drums but didn’t entice him like his OWN rhythm.

    Reply
    • Jonathan

      I tap my fingers, chew the sides of my mouth and do other sorts of finger counting. I found that having something else in your hand can help, but the best thing is being aware you are doing it and trying to be mindful to stop. I know this is easier said than done. But also being aware of heightened anxiety may be why you are doing this can be beneficial. When do you do it, are you stressed. I also chew a lot of gum.

      Reply
  • Jim

    My OCD is bad I’m a checker everything in house must be a cirtin way . While checking I grind teeth because I know what I’m doing is stupid but still do it check check check . It builds up the stress then little things get me mad some times I break my oun stuff out of frustration . Once I break one thing it makes me mad that I Brock it but I keep going untill iv destroyed almost all my stuff . When done I’m exhausted I sit back and think about what I did and go into deep depression and don’t clean or anything for over a week I just wake up mad and discussed. Lost and overwhelmed. Then for a few days after the real storm I’ll still walk around breaking my oun shit still not in rage though just because I feel like iv already lost everything and can’t replace it . So out of discust I choose to torcher myself more by breaking small things all week . During that week my OCD leaves I become a pig no shower just sadness . Why do I torcher myself in a sick way it feels good.

    Reply
    • Jonathan

      Hi Jim, I know this is a bad time with the pandemic going around. Do you live in an area where there are OCD specialists? On this site you can get help finding a therapist by your location. I know therapy can be costly, there are also a lot of good books out there on OCD and depression. I’ve mentioned above in other post responses. Are you on any medication and have you received treatment before for OCD or depression?

      Reply
  • Jay

    I haven’t been diagnosed with OCD. I was just wondering what was wrong with my brain, started looking up how I was feeling, and have come across OCD many times. My brain gets locked in the same repetitive thoughts for months on end. it feels like torture. I don’t have any outward physical compulsions that I know of, so I never really believed I had OCD. However this article resonates with me. When I get into these obsessive episodes, I feel like I’ve lost myself. I fluctuate between pure panic and then being fatigued/depressed. I keep asking others close to me the “reassurance questions”. They help for a few minutes, but the thoughts come back. Id do anything to think normally. Living like this for months makes me feel isolated and defeated. Something is constantly eating at me and I cannot stop it. I talk to anyone I feel comfortable enough with and they just don’t understand why I “think that way”. it’s crushing and I feel like it ruins my life around me. Constant reassurance by someone you’re in a relationship with can take a toll, especially when that person doesn’t say the exact thing you need to hear and you fly into a panic again. I feel so lost but also somehow I feel stuck. I don’t know how to get out of my own head. The thoughts intrude and they’re often traumatizing or heartbreaking ones. I don’t want to think about these things anymore. Day to day life is difficult. I wake up wishing I wasn’t alive. I don’t want another day like this.

    Reply
    • Jessica Price

      Hi Jay,

      Thank you for sharing your story, and I’m so sorry to hear that you’re struggling. Please don’t hesitate to contact us at info@iocdf.org so our resource specialist can help you.

      Reply
      • Jonathan

        Hi Jay. I too didn’t have outward compulsions that people could see while having constant intrusive thoughts over and over. The only relief I got was while sleeping. I would take Jessica’s advice and seek help. You can get better but reassurance seeking is not the way, trust me. Get a therapist who can teach you about ERP for OCD and ask about a psychiatrist who may help you with medication. I found medication extremely helpful along with the ERP. Hang in there, I didn’t want to go on another day either. But this can be treated and you can get better if you put the steps in.

        Reply
    • paige

      i’ve been feeling the exact same way, same thoughts that were mentioned in this article. it’s killing me honestly, i just want it to end, i don’t know how i got this way. i cry everyday and i don’t know what do. i haven’t been diagnosed with ocd and never thought that i had it. i was diagnosed with anxiety, and soon as i was everything just got worse and it isn’t letting up. i’m scared and i truly don’t wanna live anymore and i only stay because i don’t wanna hurt the people who love me.

      Reply
      • Jessica Price

        Hi Paige. Thank you for sharing your story, and we are so sorry to hear of your difficulties. It sounds like it has been a very tough path for you, and hopefully we can work together to move forward.
        Please feel free to call our offices so we can work through your options together – we can be reached at (617) 973-5801 between 9:00am – 5:00pm EST. If you like, you can also take a look at our website at http://www.iocdf.org. There is a lot of good information about OCD and treatment options, including our Resource Directory to find help in your area.
        Additionally, we urge you to call the National Lifeline if you ever feel like harming yourself or ending your own life. The National Lifeline can be reached at 1-800-273-8255, or online at http://www.suicidepreventionlifeline.org/ (they have an online chat function if you are in crisis). Having OCD can be a very hard journey, but there are options out there and there is hope.

        Reply
      • Jonathan

        Hi Paige. Please follow Jessica’s advice. Reach out. I was convinced I had to kill myself as I mentioned in this article. But with the right treatment, medication and therapist you can get better. OCD is highly treatable, please take the first step. Hang in there. It’s OCD ruling your life now, this is temporary. OCD and what it is telling you is not the real you.

        Reply
  • Alouis Yap

    I’m an OCD sufferer for over 20 years. Now I realised my intrusive thoughts won’t realised. Please tell me, have you thought that if you dont do what your OCD tells you, will the thought become real? Example: Whatever I want to do, like turning the door knob, my brain tells me to redo, if not my loved ones will get the consequences that my brain shows me in the mind. It actually shows me the image.

    Reply
  • Jonathan

    OCD seems like it is showing you an image and is very real. But at the end of the day it’s OCD; it’s just thoughts. It’s like a gargoyle on your shoulder lying to you all day. The more you give the thoughts merit and do what they ask, the more you reinforce that thought is valid and OK. How to get out of that loop? Seek exposure response prevention from a reputable psychologist who genuinely knows about OCD and inquire if medication is right for you from a psychiatrist they may recommend. 20 years suffering is 20 years too long. Please get the help you deserve.

    Reply

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