The Loneliness of OCD

My friend Sunny over at 71 degrees and Sunny commented on a recent post of mine. She brought up several good points, but what touched me the most were these words: “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 IOCDF Annual Conference this summer I heard conversations like: “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 OCD sufferers. 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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24 Responses to The Loneliness of OCD

  1. Beautiful post, Janet! It is a lonely illness, but people like you and other bloggers help me feel less alone. I don’t have a lot of people “offline” to talk to about it, so I appreciate the online support.

    • ocdtalk says:

      Thanks, Tina. I think we all appreciate the online support. I know I do! I also know you do a great job of relating to to other OCD sufferers and making them feel less alone.

  2. krystallynn says:

    I think it is really hard for me personally, because I know how irrational some of my compulsions are. Even I think I am being weird sometimes ,but I feel I have to do it anyway. So if I am thinking I am weird, why wouldn’t other people? So of course I hide it because the last thing I want is to stand out in the crowd for behaving strangely. Of course the bright side of this is even though I have a mental illness, I am not insane and recognize this is strange behavior and that an obsession is an obsession .
    Meeting other people,with OCD in person or even on the internet, and seeing how bright they are, the responsible citizens they are, , interesting and just how much they care for each other .makes me feel less lonely but also like I am part of a group of people who have a lot going for them.

  3. ocdtalk says:

    Thanks for your comment, Krystal Lynn. I have always said the people I’ve met with OCD are some of the sanest people out there, and I mean it! And you are right to feel proud to be part of a group of people who, in many cases, have overcome what seem like (to me, anyway) insurmountable obstacles and have gone on to lead rich, fulfilling lives.

  4. Cherie says:

    My son is 10, he was diagnosed this past May. For the past 4 months he has been working to master his OCD and come a long way. He shared his diagnosis with his friends who were very accepting and understanding. He was nervous about returning to school and what the other children would think of him. He surprised us by deciding to run for student council this past week (4 months ago that would have been impossible because he had become so withdrawn!). He resigned himself to the fact that he would run but not win, like last year. But was he surprised when he won. He said “They like me…….they don’t even care that I do weird things!” It was such a wonderful moment for all of us. He is realizing that he does not have to be “alone”. His peers may not understand what he is going through but they accept him for who he is. I know the loneliness will still be there at times but it was such a great lesson for him to put himself out there and see what great things can happen inspire of all he is struggling with! He is a very strong and amazing little boy! We are so proud of him.

    • ocdtalk says:

      Cherie, I just love your comment and reread it a few times. You do indeed have a very special little boy and his story is so uplifting. How great that he has already gotten a proper diagnosis and is working on getting better. That is a huge plus, as the longer OCD goes untreated, the more entrenched it usually becomes. Kudos to him and his friends and you, and congratulations on his student council win! Thanks so much for sharing.

    • 71º & Sunny says:

      Wow – Cherie, what an incredibly brave boy you have. This story makes me want to cry! I can only imagine what the future holds for this little guy.

  5. karin says:

    How true! If we had a broken leg people would ask how it’s going, and would be interested in the ‘funny’ things we might have to do to get around. But with ocd i feel i am all alone. When i don’t have symptoms, my family is just happy. They ‘tolerate’ my requests to wash as long as they’re not too many or too much. But i don’t get any ‘ wow, you haven’t had an ocd hit for awhile’ or anything to show that they get that i’m working hard.

    The whole game plan is to look and act ‘normal’ and when i do, it’s just normal and thus doesn’t need commenting on.

    When people ask ‘how are you?’ i’m pretty sure they don’t want an ocd report. All they want is ‘fine’ or well, i have a sore throat. Just something easy.

  6. ocdtalk says:

    You bring up some good points, Karin. Could it be that your family thinks when things are going okay, you’d rather not talk about OCD at all (even in a positive way)? I’m just wondering, because when my son Dan’s OCD was bad, I also felt like I never knew the right things to say or not say. It’s a learning process for all of us. Nobody gets a “how to act” booklet when they or a loved one is diagnosed with the disorder. It’s so hard, but talking with Dan and his therapist about what he needed really helped. We learned to praise at the right time, ignore things when necessary, and act “normal” at other times.

  7. 71º & Sunny says:

    Oh, Janet, I’m so touched that anything I said would have spoken to you! The isolation and loneliness factor was definitely one of the reasons I wanted to blog – to just provide a place where others feel safe and understood, even if just for a minute or two. It has also brought immense comfort to me to connect with others online.

    It’s true, sometimes I have to remind myself to try to understand other OCDer’s obsessions and compulsions. Their issues may be different than mine, but they are every bit as painful. Fear is the underlying emotion and though we may be fearful of different things, the fear itself sure feels the same.

    Thanks for bringing Dr. Szymanski’s blog to our attention. I was not aware that he was blogging and I thought his post was excellent.

    • ocdtalk says:

      Hi Sunny, Yes, your words did really speak to me…..enough to write a post about them! I always look forward to your thoughtful comments. I really liked Dr. Szymanski’s post also.

  8. Lolly says:

    This post is so wonderful and so true. Again, Janet, thank you for being such a wonderful advocate. OCD sufferers and those trying to understand it sure can feel lonely. We have to stay together, knit by this common bond that we have in order to remind ourselves that we are indeed not alone.

    • ocdtalk says:

      Thanks, Lolly……..I’m so glad the Internet was invented so we can blog :). How isolated those with OCD must have felt when there was no easy way to connect with other sufferers.

  9. vivianalvina says:

    Janet it is very isolating and thankfully now is talked about more and treated. I am 51 yrs old and was not even aware until I was in my 30’s what it was I had that made me so different. I have pure O with my OCD and spend time obcessing more than complusing. I also was a chronic hair puller who had been made fun of all my life over this and did not know it was a disorder called trigitolmania and went along with OCD tendancies. I am now proud to say I have a full head of hair and even though I battle this daily I am thankful I have over came quite a bit. Great blog!
    Hugs,
    Vivian

  10. ocdtalk says:

    Hugs right back to you, Vivian! Thanks for sharing so we can all beat the loneliness that comes with OCD.

  11. mary says:

    I don’t exactly understand how to post something on Twitter, but this is a try and I hope it gets delivered. My son 26 has OCD. He often has a bright outlook about his future in his job, but he seems to always postpone really managing his ocd symptoms. I don’t agree with how he does certain things, like he has problems putting money in a bank. Recently, he had a bunch of cash stolen because he keeps it with him all the time instead of putting it in a bank. Do you think I should make my support contingent on his doing such things in a more normal way?

    • ocdtalk says:

      Hi Mary, Thanks for commenting. I am always reluctant to give advice as I am not a therapist, but with Dan, we were always told to treat him “normally” and have the same expectations of him as we would our other children. Certainly, I would advise against participating in your son’s rituals, as you don’t want to enable him. Also, if he is reluctant to pursue therapy, you can still (hopefully) connect with a therapist yourself who specializes in OCD to help you learn appropriate ways to respond to and help your son.

      • mary says:

        Hi and thank you for your response! We do not participate in any of the rituals, but I do think we have backed into a habit of making allowance for his ways. This is not treating him normally so I will give this some thought and prayer to guide us in making some adjustments. He says he wants therapy, but usually doesn’t do the homework. These sessions are costly too. We are working on it. Much appreciation for your practical wisdom.

      • ocdtalk says:

        Good Luck, Mary. I know this is all so hard. Please keep in touch and let me know how things are going.

  12. Annie Prevost says:

    I feel relieved and excited like a world of possibilities just opened up for me! I have suffered with OCD since childhood and something similar to social phobia, and I wasn’t aware this blog existed. I was researching anxiety and found your blog. Thanks for all the helpful information, and for being a flickering star in the dark tunnel of OCD.

  13. ocdtalk says:

    Thank you for the kind words, Annie, and I am so glad you found my blog also! There really is so much hope for those who suffer from OCD, and with the Internet, we can share and hopefully lessen the loneliness.

  14. william vanderpool says:

    I’ve had ocd as long as I can remember. I used to count everything by fours. I’ve long grown out of that, but it has developed into a winter flu season phobia that gives me panic and much stress. I found myself spraying lysol on my own steering wheel. Icy hands, racing heart, fear of winter flu.
    Since my phobia is of the flu, I sure don’t think exposing myself to the flu is going to work for me. Any advice? Does zanex help?
    william

  15. ocdtalk says:

    Hi William, Thanks for commenting. I’m not a therapist, and am not qualified to advise you, but your fear of germs, specifically the flu, is definitely treatable with Exposure Response Prevention Therapy. Do you have a competent therapist? That would be the first step, I believe. Good luck!

    • william vanderpool says:

      No, I have no therapist. Thank you for the advice. I’ll look into it more. My medical plan supplies me with a therapist, I believe.

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