Secretly Debilitated by OCD

I’ve written before about the severity of my son Dan’s obsessive-compulsive disorder. How it was so bad he couldn’t eat. How he’d get stuck sitting in one particular chair, hunched over with his head in his hands, for hours at a time. How he was tied to the clock for all activities of daily living. I’ve always found it amazing that even though things were this difficult for him the last few weeks of his freshman year in college, he still attended classes and managed to successfully complete the semester.

After connecting with many OCD sufferers over the last few years, I’ve come to realize that Dan’s ability to continue on with his life is not that unusual. Of course, everyone’s circumstances are unique, but it seems to me that many people who suffer from severe OCD still get up in the morning and either go to school, work, or run a household. They are incredibly brave, doing this while often dealing with non-stop obsessions and hours and hours of compulsions. And while they may seem okay to the outside world, inside they are truly tormented.

In this interesting blog post titled “Our ability to work does not define how well (or unwell) we are,” the author discusses the fact that many people believe if a person can get up and go to work, then their mental health can’t be “that bad.” This is a false assumption.  Again, while everyone is different, being able to function does not mean someone is not suffering from severe mental health issues.

Maybe this is one of the reasons why the general public doesn’t realize how serious an illness OCD is. While inaccurate media portrayal definitely plays a role in this misunderstanding of OCD, the fact that so many of those with the disorder mask their suffering so well might also be a factor. Even if an OCD sufferer’s compulsions are visible to others (a need for symmetry at work, for example), what is obvious is their “quirky behavior,”  not the depth of their pain.

Whether in the workplace, school, or home, many people still believe OCD is “no big deal.”  This lack of understanding can be especially detrimental to those seeking accommodations, both in school or the workplace. So we have yet another reason to continue advocating for OCD awareness: Things are not always what they seem. Those with OCD are often severely debilitated; you’d just never know by looking at them.

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29 Responses to Secretly Debilitated by OCD

  1. Dominique says:

    This post echoes my thoughts today as I spoke briefly to my son who is in his freshman year of college–a plane flight away from where we live. One of the hard things about not having seen him since we dropped him off at the end of August is to know how he is doing–to be able to look at him and tell how much struggle is going on–whether there is any ease at all to any parts of his days as he continues to shoulder/live with the OCD he has now had for the past 4 years…I wonder if he is enjoying his fellow students without crippling anxiety; whether he is able to full take in all he is reading and studying without having to force his way across pages that trip his OCD; whether he can do justice to the sports team he is on when the pressures of competition ratchet up OCD to screaming point. Each time I speak to him, he sounds…”okay” but I can tell by the weariness in his voice that nothing comes easy. Its just so hard to stand by…to witness the relentless nature of OCD and never be able to relieve him–even for a day or an hour–of the pain.

    • ocdtalk says:

      Thank you for sharing Donimique. Your comment brought tears to my eyes as I was exactly where you are five years ago. It is so hard as a parent to be so helpless. But there is so much hope for OCD sufferers. I don’t know your son’s story, but intensive ERP Therapy made a world of difference for my son Dan. Please let me know how your son is doing as the year progresses. I am thinking of you both.

      • Dominique says:

        Yes–fortunately my son was able to go through an intensive ERP therapy program during his gap year last year. He also meditates a great deal, which is what he finds to be most helpful in neutralizing his OCD. But he is still working at it all the time…it is just such an incredible burden.

    • ocdtalk says:

      Oh yes, I do remember you telling me about your son in my post about ACT. He sounds like an amazing young man who is dealing the best he can with his OCD. He’s lucky to have your support as well, and I hope things get easier for him as the year progresses.

  2. Tina Barbour says:

    You have written about something very important, Janet. “Things are not always what they seem. Those with OCD are often severely debilitated; you’d just never know by looking at them.” That is very true for many people, I believe. It was for me. I managed to go to grad school and keep up with a teaching assistantship while I was in the midst of the worst OCD and depression of my life. I even believed for a while that I couldn’t have been that bad off if I was still able to function. I was forcing myself, though, to appear as “normal” as possible because of my fear that someone would figure out something was terribly wrong with me. Thank you for writing this.

    • ocdtalk says:

      Tina, thanks for your insight. That’s interesting that you even had yourself convinced things weren’t that bad because you were functioning. Also, that fear of being “found out” kept you going. That must have been torturous. I’m so sorry you had to go through all that…..

  3. 71º & Sunny says:

    Janet, I have to echo Tina. This is an important topic. Thank you. I was also in school during my worst OCD crisis. Even my psychologist seemed surprised by how much I was able to accomplish in spite of the severity of my illness. Even though I felt like I was dying inside, I was still turning in “A” work in school (because I wouldn’t let myself turn in anything but that). The pain was agonizing, but only those closest to me at that time had any idea. Looking back, I don’t even think they fully understood the depth of suffering. The symptoms of OCD are often so humiliating that you will do almost anything to hide them. That is unfortunate, because I think it adds to the length of time that it may take to get treatment. 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.

    • ocdtalk says:

      Thanks for commenting, Sunny. I think you’re right. I don’t think anyone without OCD can truly understand the depth of suffering you went through. And your description of OCD as a “lonely illness” is spot on. Isn’t that one of the reasons why we’re all blogging? So it won’t be such a lonely illness anymore. I’m so sorry things were so bad for you. Look how far you’ve come!

  4. ann says:

    This is so true. Somehow I’m able to function everyday and it takes everything I have. I think ocd sufferers are the strongest of people.

  5. ocdtalk says:

    Strongest, and bravest, Ann. I couldn’t agree more!

  6. krystallynn says:

    My husband was in the military and he was assigned to aircraft carriers for most of those 23 years which mean’t they were always at sea for exercises plus he did 6 separate deployments, usually 6 months long but some lasted 9 months to 15 months at a time. It is hard for even healthy families but I look back and wonder how I managed to care for our 3 kids during those times when my OCD and depression was so severe. I know my love for my children is what got me out of bed in the morning, I had to do it so I did and maybe having to do that is what saved me.
    I would say 90% of my suffering is non-visible. I know of a few, but not many other illness’s, besides mental illness, where people feel so ashamed of what they have and struggle so hard to appear normal. I think it has even limited my social activity because I am so afraid if people find out they will think I am weird or won’t want to be around me.

    • ocdtalk says:

      Thanks for sharing, Krystal Lynn. It was hard for me to raise three children and I didn’t have the added stress of an absent husband and OCD. I think you are amazing! I’m just so sorry you have had to struggle so much.

  7. karin says:

    While I was at university i didn’t know i had ocd. In fact i had scroupulosity ( i was afraid that if i scraped the wall while bringing a tv set upstairs that i owed them a new wall, not to mention i had to confess it! ) On top of that, a few years later came the: what if i’m gay??- i had my first real boyfriend so anxiety go tto me, i guess. Thank goodness the contamination stuff wasn’t there at the time- well, it was a little but not to the point it got after my dd was born. I just thot i was lazy, weird, full of sinful thots (i prayed sooooo hard for that rocd to go away) and stupid cause i thot it was ME. I didn’t get all a’s, altho i wanted to :). i also had people skill problems- talking to strangers, or anyone else for that matter ( i came from an emotionally/physically abusive background where i just faded into the walls as much as possible). I guess i’ll never know how much of my energy went towards being ‘normal’ that could have been focused on school work. But since it was all ‘in my head’ there was no reason why i shouldn’t function like everyone else.

    • ocdtalk says:

      Thanks for commenting, Karin. You certainly have been through a lot. You are right; so much energy goes toward appearing “normal,” that there is not much left for anything else.

  8. Janet, thank you for posting this! It is SO TRUE. Even in my darkest days of mental breakdown, I could still “suspend” my obsessions during the 8 hours of the workday.

  9. ocdtalk says:

    Thanks for sharing, Jackie. Now if everyone with OCD could just “suspend” their obsessions forever!

  10. Andrea says:

    You are so right. Even with the most horrible intrusive thoughts, I put a smile on for the world. I hid it for years without a single person having any idea something could even be wrong or that I was being tormented by my own thoughts. I agree with what was said above in that hiding it can also mean not getting treatment as quickly as we should & that it can be such a lonely illness. So thankful for finding this community & for others talking about it like you do 🙂

    • ocdtalk says:

      Thanks for sharing, Andrea. I agree….it is SO important that we talk about OCD, so that hopefully those that come after us will not feel the loneliness or the need to hide, and will seek help sooner.

  11. Abigail says:

    This is a great topic. I read the post you refered to as well. I’ve been able to work most of the time through my struggle with depression, anxiety, and OCD. Often (like now) only part time, though. And I use it all against myself. If I’m just working part time, I am frustrated because it means my mental health isn’t “good enough” to work full time. On the other hand, I wonder if I’m being lazy not working more. And however much I’m working, wether full or part, I think it should mean that I’m less ill, and then wonder why I struggle as much as I do. I wonder if I’m making it up. Of course, I’d probably have all of those negative thoughts with or without the work issue; they could rest on another issue while saying about the same thing.

    Another thing with diagnosing mental illness is that they look at how much it disrupts your life, and work or school is one area they look at. Thus, I wonder, if you look like you are functioning well at work, does that influence your diagnosis, even if it doesn’t change the amount of suffering? Because that doesn’t seem right.

  12. ocdtalk says:

    Thanks for commenting, Abigail, and I think you bring up a good point about someone who appears to be “functioning well” because they go to work, or school. I would hope that good therapists would realize that just because people are able to uphold their responsibilities, it does not necessarily mean their lives are not disrupted. If you are living with constant fear and anxiety and are continually tormented by your thoughts, I’d say that’s pretty disruptive!

  13. Luke says:

    Thanks Janet for this article. Often doubting the reality of my ocd I have said to myself well you can’t be that bad as you are still managing to get through the day and no one else seems to notice. It is so encouraging that this behavior and thinking is identified by others. L

  14. ocdtalk says:

    Thanks for your insight, Luke. It’s interesting that this ability to continue on not only makes non-sufferers think OCD can’t be that bad, it also makes those with OCD doubt the severity of their disorder. Thanks for sharing.

  15. Dominique says:

    I am wondering if anyone has found ANY medication that is helpful for OCD?? It seems that there is definitely no magic bullet–some mental illness seems much easier to treat.

  16. ocdtalk says:

    I know there definitely is no “magic-bullet” for treating OCD, though medication has certainly been helpful to many sufferers. But medication alone is rarely enough, as I understand it. You need to do the work of ERP Therapy as well.

  17. Margaret says:

    Hi,

    I’ve just recently found out that I have OCD. I’ve been diagnosed and treated for various things including Bipolar Disorder which wasn’t anywhere near correct as I’ve never been manic or anywhere near it! I’ve always thought there was something “wrong” w/ me my whole life, and I was face picking and constantly ruminating about things always trying to be “perfect.” It didn’t help that I grew up in a house where I thought if I was “perfect” my parents would love me and be proud of me. That didn’t happen. Don’t get me wrong, I love my parents b/c they’re my parents, but I will never have “that” kind of relationship w/ them. They have their own issues that will never be dealt with. I have changed from face picking to feet picking instead. I am constantly obsessing about things that happened to me in life, or trying to find an answer to any little thought that enters my head. The Internet really reinforces this part of my obsessive behavior, but I just can’t stop it. People at work would call me the “research queen.” But I just want to spend time w/ my 3 kids and husband and enjoy life. The OCD makes this next to impossible when I’m constantly ruminating, picking at something, or freaking out b/c my house is a mess, or obsessing about my body…etc., In addition to this, I have no time management and I cannot focus on what I’m supposed to focus on. I will literally fall asleep when I’m supposed to be “training” on a particular task. I wish I could just verbally vomit all of my issues, but there’s just not enough space. So so happy to find this site! So glad I’m not alone. 🙂

  18. ocdtalk says:

    Hi Margaret,

    I am so glad you wrote. You are definitely not alone. I am so sorry you have suffered for so long. Now that you finally have a proper diagnosis, I hope you have access to therapists who specialize in treating OCD. There is so much hope for those who suffer from this disorder. While treatment isn’t easy, it does work. You deserve to be able to enjoy your life with your husband and children. Please keep in touch and let me know how things are going.

    • Margaret says:

      Thank you so much for the reply. I’ve also recently discovered that my three year old is picking her skin and my five year old bites her nails until they bleed! I’m so worried about their future as a result of this. I’ve been seeing a psychologist/psychiatrist for a while. I’m living in a military environment, so there’s not a lot of specialists for this on a military installation, but it’s better than nothing. I just hope we can find a medication that will work for me. I have recently become a stay at home mom, and I freak out every time I have to take them anywhere as I am so afraid of not doing things “perfectly.” Thank you for the kind words. It is so hard to talk to my husband about this stuff. He just doesn’t believe it’s real. It makes it very difficult sometimes. He will say things like, “Just take a deep breath or quit doing that.” So frustrating.

      • ocdtalk says:

        Hi Margaret,
        I’m not sure what type of therapy you are having now, but traditional “talk therapy” has been known to exacerbate OCD sometimes. Just something to keep in mind. If you don’t have a specialist nearby who uses Exposure Response Prevention (ERP) Therapy, perhaps you could look into some self-help books or iphone apps that can get you started.
        I know it is hard for those without OCD to understand how very real this illness is. I hope your husband can become educated about the disorder and learn the best ways to help you. Family support is so important. If there is anything at all I can do to help you, please feel free to email me at ocdtalk@yahoo.com. I really feel like better days are ahead for you.

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