The Loneliness of OCD

by stuart miles freedigitalphotos.net

by stuart miles freedigitalphotos.net

The next few weeks are going to be very busy, as I try to spread the word to as many colleges and universities as I can about Overcoming OCD: A Journey to Recovery. I’ll be sharing some of my older posts during this time and will be back with something new toward the end of July. I think the post below, which first appeared in October 2012, is fitting as we prepare for the IOCDF Annual Conference in Boston this summer:

My friend Sunny once left a comment on one of my posts: “The symptoms of OCD are often so humiliating that you will do almost anything to hide them….If no one around you notices what you are going through, then there is no one to encourage you to get help even though you may need it desperately. It can be such a lonely illness.”

Such a lonely illness. Those words ring true and pierce right through me. Thinking back to when Dan’s OCD was severe, especially before he received proper treatment, I know he felt incredibly alone. How could anybody possibly understand or relate to what was happening to him?

In this article by Dr. Jeff Szymanski, he explains how even those with OCD often have trouble relating to others with the disorder:

Even in a facility dedicated to individuals with OCD, they would stare at each other in astonishment as they explained their behaviors to each other: “You do WHAT? Don’t you know that is crazy?” I get that it is hard to understand what someone with OCD actually goes through — even people with OCD have a hard time being empathetic with each other!

It is not only those of us without OCD who have a hard time making sense of the disorder; it can even be difficult for those who have OCD to understand somebody else’s “tailor-made” obsessions and compulsions. More loneliness.

That’s one of the reasons it is so important to keep sharing. At the last IOCDF Annual Conference I attended I heard conversations such as: “Oh, you’re kidding me, I do that too,” and “You’re the only other person I’ve ever met who…” The first person OCD blogs I follow are  filled with similar comments. The more we talk about OCD, the less alone everyone will feel.

And I’m not just referring to those with OCD. I’m talking about their loved ones as well. I’m talking about me. When I had no idea how to help Dan, or even where to turn for assistance, I felt so alone.

I know now that I am not alone, and Dan is not alone either. Having obsessive-compulsive disorder is hard enough without the feelings of isolation that come with it. So let’s keep talking and blogging and coming together. OCD is nothing to be ashamed of or embarrassed by. If we unite against the tyrant that is OCD, we can, at the very least, end the loneliness.

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16 Responses to The Loneliness of OCD

  1. Indeed friends. “We” are not alone. I have been in (proper thank goodness!) treatment for OCD for 25 years this year. I am convinced I had the illness from birth, and I recall my first symptoms at age 10. Let’s keep talking and spreading the word!! My symptoms have improved perhaps 70% (I was completely non-functional at my worst.) But I am NOT satisfied with my progress. I am still VERY handicapped, frustrated, and discouraged. We need better treatment options. Supporting each other (talking) and spreading the word can only lead to better treatment options! Happy 4th of July to all!
    Best,
    -Paul

    • Thank you for sharing, Paul, and I am sorry to hear you are still struggling so much. I agree more treatment options are needed, and there are dedicated researchers who are working on that, but for now, I guess we just need to continue on with the evidence-based treatment that works, ERP therapy. I know it’s not easy and admire your commitment to getting well. Wishing you all the best!

  2. lorreleon@bellsouth.net says:

    Dear Janet, I read your article with interest. Since I first realized I had OCD in the late 90’s and sought treatment right away, I stopped feeling the shame of OCD with others who have it. I joined OCD support groups where I lived and started a new one when I moved. The groups were by and for people with OCD, Hoarding, BDD and Trich: friends, family, medical professionals and others were welcome to attend. Among my peers I did not feel judged or ashamed. We laughed at our own foibles, cried as we suffered, shared numbers and got together outside of group. There was no judgement. It was only when professionals were involved who were not educated in how to treat OCD that judgements, threats, shame and fear developed. And I stress this was only among medical personnel who did not know how to treat this disorder effectively. OCD docs were/are amazing and without judgement- knowing the symptoms are not the person they can see beyond fear of germs, symmetry, checking, scrupulosity, superstitions and other symptoms. I really encourage people to look into joining and creating support groups for people with OCD, Hoarding, BDD and Trich. We are so connected not just by symptoms, thoughts and fears, but by our humanity. Thank you, Lorre

  3. Love this post, Janet. So many of the folks I treat with OCD are shocked when they hear what other people with OCD do. And, yet, there can be such support in knowing others are going through such a similar experience -even if the symptoms look different. Hope to see you at this year’s IOCDF conference!

    • I agree that there is comfort and support in connecting with others who truly understand what you are going through, Angie. As you say, the symptoms don’t need to match for the understanding to be there. And YES! I would love to connect with you at the IOCDF conference. I will be signing books on Friday from 12:30-1:30 so we could connect then or arrange a different time to meet. Looking forward to it!

  4. feelingocd says:

    I think loneliness also comes from the fact that people suffering from OCD segregate themselves from others when avoiding situations e.g. I often do not attend friends get-together’s when I know there will be children present as I have an OCD fear of harming children. The loneliness can also come in the form of shame: ‘What would my friends think if they knew what I was thinking?’; ‘I am a terrible person and do not deserve these good people in my life etc etc’. Sometimes it just feels easier to be alone than struggle with this false fear, guilt and shame. Friends and family play a huge part in my recovery and I am very lucky to have great support around me but still the loneliness of the illness can creep in sometimes.

    • Thanks so much for sharing and I think you bring up some excellent points. My son totally isolated himself from his friends for all the reasons you give, and it was heartbreaking to see, as his friends were so important to him. I’m glad you have supportive friends and family and wish you all the best as you work toward recovery.

  5. Great blog. You’re so right about speaking out so’s people don’t feel so alone with OCD. I’ve recently embarked on my own journey of recovering from it, and it’s tough, so reading this has helped – thank you.

    • Thanks for your comment and kind words. I’m so happy to hear you are working toward recovery. I wish you the best as you move forward and hope to hear from you again!

  6. Dan says:

    Hello. If anything I hope I can offer an experience that enlightens those who have this condition as I have found complete freedom from OCD. My entire diagnosis was OCD with bipolar tendencies and post traumatic stress. I first sick at 14. Was wrongly diagnosed as a paranoid schizophrenic. Due to the rage I carried and the symptoms from secrets and abuse. I was finally correctly diagnosed at age 26. I had been through years of doctors and endless medications. The process of getting well involved identifying the problem. Reliving and facing traumas. Understanding the event that seeded the illness and understanding how I played my part in developing it. 1st as a toddler I experienced potty training abuse. I wouldn’t go for my father so being the angry man he was he screamed at me while grabbing my shoulders and shaking me. So I went inside myself. I began to associate the feeling of having to go with the experience of terror. Which lead to running around screaming and panicking. Pushing all the time too. I also adopted his anger as my own. As the fear grew the anger was used to handle the fear. When my mother and I left it got a little better. A step father would soon come along that was everything a dad should be. Except that he had an irresponsible way with leaving adult material in plane view. So secretly looking at this material provided an escape, a fantasy, a way out of the fear. OCD most commonly involves Anger, control, and sexual fantasy. There you have a developing pattern. The first 14 years went this way. You see I never left the toilet. All emotions and feelings came inward but never went outward. So a full blown psychotic episode came. After years of meds, 3 hospitals, some on and off pot smoking I finally got serious. At 27 while medicated I physically shook for 4 straight months. It was 27 years of emotions surfacing at once. When asleep was the time being still. I went through an intense stomach pain from the shaking but eventually a session one day got me still. I was taught to ground myself. Like any other person with Anger it was fear, then rage, then guilt. After I had raged the real person would emerge with guilt. Too late then. I had harmed me and anyone who received it. It was verbal not physical. Where as my father was really angry in my case it was something I tried to use to control my fear. So it wasn’t real. The identity was in 3 ways. We named them. In this order— Anger name is Jack. The fear—-which with OCD is talking around and around not getting to a point we named Chatter. The last one being guilt we named Myself Dan. As I went thru the beginning of this journey it was imperative to self recognize which way I responded to the doctor. While doing so I had to correct the bathroom, learn to feel, and allow vulnerability to change. Because after reliving my childhood everything began to change. I didn’t drive for 2 years. I wrote about 14 notebooks fool of Journals. The anger went and I felt fear calm fear calm until thru session after session of catching myself the true me emerged. I was 28 and even my voice changed. I talked so gruff and did everything angry so long I had to find and learn me. It took 11 years. I still take medication but I have no symptoms at all. I can’t even get psychotic ever again. It’s impossible to. Each of the traumas where processed and faced. I had to forgive myself and all the abusers. I had to own up to what part I played in the self infliction as well. Now I’ve made sense of my entire life. I’ve fully accepted the illness. I’m in a healthy relationship. My father and I are close. I have been clean for a long time. The hardest part was after making complete sense of it all was seeing all the ways of my family and how I can still see in them what triggered this on me. The answer is allowing yourself. Moving on thru all your fears and facing them. Making the decision to love yourself and find compassion in yourself and others. I can still suffer a tiny bit of mania but that’s only due to doing too much healthy living that throws me a little off every now and then. With years of understanding and pushing myself I recognize it so quickly that I just shut down. I make everything wait. Or I go to sleep and awake right back in the balance. Imagine having OCD and no one can tell. I have no rituals, no obsessive cleaning, label facing, nothing. Just a life that’s fully functional. It wasn’t easy, but this could be you. It was heavy neurological therapy. Behavioral. Hypnosis for memory loss because some of my traumas where related to being verbally abused by an ex mind control government official. No! That’s not some mental paranoid comment. That one is real sadly. I’m now 38 and I feel the best physically and mentally then I ever have. It’s much harder to rely only on a pill and live in the problem. You can get completely well. But it’s a real ride. Once you start you cannot stop. Because that process opens up everything all those defensive ways you’ve created to protect your illness. You become wide open. Quitting only leaves you there. It’s a massive tear down and rebuild. In the end you find so many things you can be and do because you become free to live. Don’t society tell you it’s impossible. Any can do it. How willing are you.

    • Dan says:

      I’m not bragging. I only hope to offer inspiration. The anger and fear is completely gone. My life is busy and full. I can manage all my affairs. I’m independent. I’ve returned to work after a long therapy journey. I plan to go back to college. I have a clean home, car, and I can do all my finances successfully. I fall asleep in 10 minutes and I stay asleep. My life has purpose and all my friends mentally impaired or not accept me as me. I wish all of you suffering from OCD the same or better then me. No matter what has caused or happened you can be free. Don’t down yourself or self hate. Believe me, I used to think I was crazy and a bad person. Then I took a real good look around me and thought Man! There are people who do not suffer any mental illness at all and they make my life look like the most sane life ever. Find a doctor who listens, has the skill, and stay with that same one. Psychiatrist are great but it’s psychology that brings the cure. They only guide the process, it is you who ultimately heals yourself. Peace and good luck.

      • Thank you for sharing you story, Dan, and I am so happy you are doing so well now. It sounds as if you’ve worked really hard. Wishing you all the best!

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