OCD is Real

by stuart miles freedigitalphotos.net

by stuart miles freedigitalphotos.net

Since the publication of my book, Overcoming OCD: A Journey to Recovery, I’ve had several interviews as well as appearances where I’ve talked about our family’s story. Invariably, I get comments from people applauding my support for my son throughout his battle with severe obsessive-compulsive disorder. I have to admit it makes me a little uncomfortable, being commended for doing what I and most parents conceive as our responsibility – to love, care for, and advocate for our children. Indeed, I receive many emails from parents who are doing that very thing right now: searching for the right path to best help their children.

Of course I am aware that I typically only receive emails from parents who are supportive, and am not going to be contacted by those who believe their children should just “get over it,” or should “stop being dramatic.” But I know these negative situations exist because I have heard from many people with obsessive-compulsive disorder who were treated this way by their own parents. From being ignored to being yelled at to being called crazy, these stories are heartbreaking to me. I know how difficult it was for my son to fight his OCD, and he did indeed have a supportive family. I can’t even being to imagine what it is like for children and teenagers who have no family backing whatsoever.

Another comment I get a lot is how great it is that I, as a layperson, understand so much about obsessive-compulsive disorder. Certainly I have learned a lot about OCD over the past eight years, and I do have a fair amount of “book knowledge” about the disorder. But understand it? I don’t think so. How can anybody understand a disorder that is irrational and makes no sense? Do I understand why my son thought and acted the way he did? Not really. My only explanation is that he had severe OCD.

I am bringing this up because I want to stress that, in my opinion, truly understanding OCD is not what’s important. What’s important is that we understand our children: that they are truly suffering, that they are doing the best they can at any given time, and that the most helpful thing we can do for them is love and support them in appropriate ways. In other words, we need to understand that OCD is REAL – as real as any other illness out there. And so our children or other loved ones who are dealing with it should not be ignored, demeaned, or ridiculed, but rather cared for, supported, and loved. That, in a nutshell, is all we need to know about OCD.

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21 Responses to OCD is Real

  1. Cat says:

    It’s lovely to hear of your support and dedication to your son. As you point out, sadly, that’s not always the case. My family interpreted my MH problems as selfish and self-centred and hurtful to them. They couldn’t understand my problems meeting up in busy places or answering the phone or my inability to spend large amounts of time in people’s company. It tore us apart and today we have little contact

    • Thanks for sharing, Cat, and I’m so sorry to hear your family wasn’t supportive. I can’t even imagine how difficult that must have been for you. I’m also sorry to hear you have little contact today. In the end, however, I believe you have to do whatever is best for you and your health, and surround yourself with supportive people. I wish you all the best!

  2. Cathy Hanson says:

    Dear Janet, Thank you so much for this post, your book, and all you do to help those with OCD and their families. My son also has OCD, as well as a few other mental health diagnoses. In addition to educating myself, I have become a NAMI Family to Family teacher. I meet many family members on their way (I always hope) to becoming understanding caregivers. It is harder for some than others, but at least they will have the resources to turn to when they are ready to accept that mental illness is a brain disorder. Family to Family, as well as the other programs NAMI offers, is free and is available in every state: https://www.nami.org/

    • Hi Cathy, Thank you so much for commenting, and also for the invaluable information about NAMI’s Family to Family program. What a wonderful thing to be involved in and I’m sure you have helped many families. Thanks for passing this info on to my readers. I wish you and your son all the best.

  3. Nancy says:

    I agree about supporting our child/family member that has OCD. I didn’t feel brave or special when I went with my child to Chicago for intensive out patient therapy. Like you say-it is what most people would do if they could. But frankly we were not always very nice. I think we got some bad advice and didn’t understand very much even though we were looking for medical/mental health help. I guess people should just keep muddling along and looking for the best help.

    • Hi Nancy, Thank you so much for sharing. Sure, we all make mistakes, but I think it is our intentions that are so important. I know our family certainly “muddled along” at the beginning, until we learned more about OCD and its proper treatment. I hope things are going well now for you and your child.

  4. I greatly admire you and your family and the support you gave Dan. I couldn’t help contrasting it with my own experience, which, as you know, was not good. My parents didn’t try to understand me. They just tried to forbid me from doing the things I felt compelled to do. They were ashamed of me and very critical. They thought I was being contrary, stubborn, disobedient, and my mother more than once said, “Sometimes I think something is wrong with you.” Uh, yeah. I try not to be bitter. But more than bitterness, I feel sad about it. I wonder what it would be like to know unconditional love and support from my parents, and I am grateful when I see it in other families.

    • Your feelings make perfect sense to me, Tina. I just wish things had been different for you when you were a child. I know you have a good support system now, but also know that doesn’t take away the pain of earlier years. Thanks for sharing.

  5. Joshua Lenio says:

    It is exciting to read your story and your advocacy for OCD. I agree with you as well about how OCD isn’t just OCD. Meaning that its not just to check the door three times or wash your hands a certain amount of times. I was diagnosed with OCD when I was fifteen (seven years ago) and the licensed clinical social worker (LCSW) said it was the worst he had seen at the time. So I think it is safe to say severe OCD. When I would tell people what I have they would not take me seriously and seem to down play the severity of my OCD. I’m glad that there are those such as yourself who are speaking out for us and trying to eliminate the stereotypes and stigmas.

    • Hi Joshua, Thanks for commenting. Yes, I agree that OCD is so misunderstood. People can see the compulsions, such as handwashing, but not the fear and anxiety that drives the compulsions. So they think it’s no big deal. I hope things are going well for you now and wish you all the best. I hope to hear from you again!

  6. Hanne says:

    Amen!

  7. keen08 says:

    Thanks for the posts, and for helping parents see that people don’t have OCD on purpose, its a real illness that they don’t choose! I was one of the unlucky ones who was abused because of my OCD and other mental illnesses rather than given help or support to get getter. What people need the most is love! Compassionate love. That is what will help them get better.

    • Thank you so much for sharing, and I’m so sorry you didn’t get the love and support you needed. I like how you put it, that nobody gets OCD on purpose. Who would choose to be tormented this way? I hope things are going better for you now and appreciate your comment.

  8. Grace says:

    HI Janet, I just finished reading your book, you and your husband are the best parents in the world. What a journey. Your book has been very helpful to me. I have a son with OCD. Just like Dan he diagnosed himself and told me , unfortunately I did not believe him right away, so it took a while before we sought help and when we did we ended up getting bad therapy because it was not ERP. He was given medicine and he got side effects and I had to pick him up from his college dorm as the OCD got worse at college. I wish our family was working together as yours did, but we don’t. My husband blames me for putting our son on medicine and he does not believe that OCD is real. So its me, my son and God in this journey. My son is receiving ERP and is working very hard to get better and has made improvement. The anxiety that I have however is just unbearable. When you talked about how much anxiety you had and the day you took the tranquilizer with your son, I wished I had a tranquilizer for myself. The day you went to Dan’s school and looked at the other students looking so normal. That ‘s how I felt when I went to pick up my son’s stuff, the kids looked so normal. My heart broke and I will never forget that day. I think the most difficult thing has been the fact that my son is 19 and can consent so I’m basically shut out of decisions that are made for him which makes my anxiety even worse. The other day I thought that perhaps I have not had any other thoughts in my head for a while except OCD. I’m consumed with thoughts about OCD and getting my son better. He is set to go back to college in the Fall. I cant wait to see that. Four months seem like eternity. I hope our journey to recovery ends as happy as yours. I wish Dan every good thing in life because he deserves it. OCD is horrible.

    • Hi Grace, Thank you so much for sharing (our stories are quite similar!) and I appreciate your good wishes for Dan.We are so thankful he continues to do well, and your son will get there too. I truly believe that. He sounds as if he is on the right path, and I hope you can focus on taking care of yourself now. Feel free to email me at ocdtalk@yahoo.com if you want to “talk.” I wish your family all the best.

  9. Beth says:

    Hi!
    I’m really happy that your son found a path that worked so effectively. I find him to be a very fortunate young man,indeed. You went so far for him, I hope it inspires other families out there. I didn’t have a family who could maintain sustained support and advocacy. I am left mainly with medication and some supportive therapy. While it’s great that your son had the journey you paved, there are those of us who do have to take the only road which isn’t closed. I am lucky though. I am on that some road and meds *do* help me. My psychiatrist is extremely seasoned and yes, I am on lots of meds. Paxil,at a high dose, helps my severe OCD and depression. I am still disabled, however. I am also alive. I wish I could afford more therapy,but I’m making the most of what I*do* have.

    Continued progress and prayers to you and your family!

    • Hi Beth, Thank you so much for sharing. Yes, I do realize that our family is fortunate to have been able to support our son in so many ways during his toughest times, and I know that this might not, realistically, be possible for everyone. I’m sorry you didn’t get all the support you needed but am glad that you have found medications to be helpful. If you are interested in pursuing ERP therapy but can’t afford it and/or don’t have access to good treatment, there are workbooks and websites that might be helpful to you (see sidebar on my blog). If you have my book, there are many resources listed there as well. I wish you all the best as you continue your journey and hope to hear from you again.

  10. Kyle says:

    I have, I guess, severe OCD, and I’m just now realizing. Just today I’ve felt the desire to hang myself, slice my wrists open, yank one of my molars out. Then there’s also the fact that I have muddled, disorganized thoughts and I don’t know what the Hell is wrong with me and what’s going on. I just know that I’m getting worse and that nobody gives a damn.

    I also have been diagnosed with Generalized Anxiety Disorder, depression, Asperger’s, ADHD.

    I’m one of those people with OCD who does NOT have a supporting family. Literally every time I try to talk to mother about the way I feel and how I feel like I’m in an endless loop of never ending mediocrity, despair, and insanity, it’s all about how I just need to suck it up, join the real world, how she sacrifices so much to do everything for everyone, and how nothing I ever do is ever good enough for her. Even whenever I just try to APOLOGIZE for why I’m irrational and angry, she still has her way of bringing me down and making me feel terrible about it, making me question everything I say and feel. Hell, I actually picked up a knife for the first time in a couple of months and started cutting myself because of everything she said to me.

    I don’t really know where I can turn to. I wish I could go to my therapist more often, but no matter how often I tell them I need to see my therapist and psychiatrist more often, they do only once per month. And that’s only if I fight with them beforehand. And on top of that, I don’t know WHAT kind of treatment I need because I don’t WHAT THE HELL IS WRONG WITH ME. It’s obvious that my therapist isn’t doing any good, but I don’t know what kind of therapist I need. I’m guessing I need one for both OCD AND depression, but money doesn’t grow on trees, as my mom constantly reminds me.

    As for the other thing that may possibly be wrong with me, psychotic depression specifically also seems pretty likely. I’m on some anti-psychotics, which is possibly why I’m not even crazier than I am already. But then in one of your articles on Psych Central you said that anti-psychotics can just make OCD symptoms worse.

    I really don’t know what to do. I’m kind of afraid I’ll end up killing myself at this point, but the thought of going on “living” like this and losing my youth on top of everything else is even worse than the thought of dying.

    • Kyle says:

      I also forgot that I have bipolar disorder. Probably bipolar II.

      • Hi Kyle, I am so sorry things have been so difficult for you, and that you have not gotten the support you need from your family. Please know there are people who care. I hope you will reach out to others – perhaps clergy, a close friend, the IOCDF – for help and advice. I don’t know where you live but hopefully you can locate some additional support services in your area. You say you can’t afford to see your therapist more, but maybe he or she might have some suggestions as to where you can get additional low cost/no cost help. I wish you all the best. Please do not lose hope!

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