People have told me I’m brave for these posts, but I’m not–I swear I’m not–as evidenced by the fact that I’ve meant to write this post for forever, but I’ve held off. I don’t even plan on posting it on Twitter or Facebook. (Though I know it’ll autopost on Twitter at some point.) I want this searchable, though. If you saw the searches that end up on my blog, you’d know that this post needs to happen…and, yet, you have know idea how much I don’t want to post this.
If my usual candor seems absent, I hope you’ll forgive me because once upon a time, someone found out I had OCD and they assumed I was dangerous, violent, and suicidal. At the time, I was none of those things. I’ve only ever been one of those things. But mental illness isn’t a well-known topic and that person’s ignorance…well, let’s just say that things weren’t good for a bit, and there were repercussions.
If you don’t have a lot of experience with OCD, you might assume that the risk of suicide is fairly low–when the inverse is actually true. There is a very high-rate of suicidal tendencies among those with OCD. A quick internet search has it at 50% according to some studies. How accurate this is, I don’t know. I do know that in those I’ve spoken to on the topic, 100% of the women had considered it at some time. Fewer men, but I haven’t spoken to as many about it either. If you don’t have OCD, you might find this surprising…so I’ll explain a few of the reasons.
1. OCD is often found with other conditions: depression, autism, agoraphobia, anxiety disorders, bipolar disorders, and anorexia to name a few. The presence of other mental disorders will obviously acerbate many of the symptoms and feelings associated with OCD. When things stack against you, depression seems as inevitable as the next compulsion.
2. It’s the bane of OCD that we know our rituals, our obsessions, our avoidance, our behaviors aren’t actually accomplishing anything. But we do them anyway. We may try to stop, but, even then, we know we’re pushing against it. That lack of control is frightening in someone who needs control so desperately. The harder we push against what our brain is suggesting–the more aware we are of it.
At some point, everyone I know with OCD has wondered if they were actually mad–or going mad. This fear of madness–this lack of control–has teeth. These worries get in your brain and make functioning harder. Even medicated and with the support of many people and doing well, this uphill battle is tiring. The path seems long–actually it seems endless. Most of us know there is no magic cure. OCD feels terminal. (I’m explaining the feeling–not the reality. There is a lot of hope at the end of this post–push through.)
3. The insomnia. How long does it take you to get to sleep? The average person takes 10-20 minutes. It takes me hours. Last night, I was stressed out and obsessed so it took me three hours. Tonight I couldn’t sleep until I wrote this post. Insomnia affects the greater percentage of people with OCD. After three hours of staring at the ceiling–things look bleaker than they are. Your body doesn’t handle long-term sleep deprivation well. I’ve been sleep-deprived my whole life. It compromises your decision-making skills quite a bit.
4. The darkness. I’ve mentioned in another post the issue of dark thoughts, but I don’t think you can really comprehend how dark they really are if you don’t experience them. Those nightmares you have where you behave so much at odds with how you are that you wake up gasping and loathing yourself until the nightmare fades? The nightmares where you feel…depraved and ugly on the inside? Those are the thoughts that brush our heads during the day. In church. On a bus. In a restaurant. At our kids’ schools. My OCD medication keeps them at bay fairly well, but when they’re strong and present, it’s really hard to think of myself as a good person…which leads to:
5. The impossible self-expectations. I’m the middle child. I followed two brilliant, logical brothers, and I felt like I could never measure up. My teachers didn’t help the situation. I heard, “Oh, you’re Adam’s sister,” in every class…on every first day…everywhere. Add to that, I thought I was going insane, and I had the dark thoughts to compete with. I never thought I’d be good enough because I thought I wasn’t good on the inside. Most people with OCD are driven. It’s never enough. We’re never enough. The hormones of my teenage years were awful, and then, later, postpartum depression hit me and, once again, I never thought I’d be good enough or sane enough. It’s brutal.
6. The isolation. I’ve heard the average age of diagnosis for OCD is 28 years old–for the official diagnosis. Most people with OCD have known for many, many years, but they’ve been hiding it. When you’re hiding something as big as OCD, you tend to keep some of yourself apart. Also, if you have the fear that you’ll inadvertently harm anyone who gets too close…you want that space. OCD is lonely. You’re doing things that don’t make sense for reasons that sometimes don’t even correlate. The darkness inside your head feels crushing. It’s not surprising if you wonder if anyone can understand you. (Finish this post–it gets less…this. It gets better.)
7. The treatments. OCD is often difficult to treat. I can’t even begin to tell you how many different meds I’ve tried. Manipulating brain chemicals can be a scary thing. You know the big warning on anti-depressants saying to consult your doctor if you have suicidal thoughts? Yeah, well, guess what? OCD is typically treated with anti-depressants. And that side effect…is ugly…and the reason why I discontinued several meds abruptly. It’s horrible. If you read my other posts, you know I washed out of therapy–twice. Two therapists told me that therapy was making me worse and both said…that for the first time ever…they were recommending a patient stop therapy. Twice. Treatments are sometimes tough to get right and often a lot of work. I work harder at being sane than at anything else.
Now that you understand the why…let me stop and say that none of the above matters. If you’re reading this and you’re dealing with OCD, the road may be rough but there is always someone out there willing to walk beside you even if you don’t know it yet. They don’t have to “get” OCD to be supportive and love you. And everyone is worthy of love. You are worthy of love. There are qualities inside you that will never be duplicated in another human being ever. You have the potential to do things for the world that no one else can do. You are worthy of respect and kindness. Never forget that.
There are these moments in my life that have seemed so desperate–so intense. Nothing seemed to matter as much as what mattered in those instances. That is the lie of OCD. The intensity is a mirage. It’s brain chemicals producing an urgency. Life is longer than what happens in a second, or a day, or a week even. And life can be brilliant and amazing and shouldn’t be sacrificed for what you feel when your brain is working against you. The past is the past. The present is fixable. The future can be better than you’d ever guess if you stop focusing on the intensity of one single moment, one situation, one horrible year. You have that control. You are enough–powerful enough, good enough, strong enough. You are enough.
I started off saying that I’m weak…that I’m not brave, but I think this weakness has made me strong. The ability to say that the fight is hard is not the same as giving up. It is recognizing that being human means being comprised of parts that might not always work how they should. This weakness–this madness–this frailty has helped to strengthen others. If I’d known as a teenager that I’d be able to talk about any of this–that I’d be able to help other people by talking about it–I’d have seen a light at the end of the tunnel. Instead of worrying about being normal or cured, I’d have focused on being better at being me.
I’m not brave enough to spread this around, but I’m just brave enough to post it, and I hope that if you have OCD, you’ll recognize in this list of reasons why suicide lingers…the very same reason why it shouldn’t: all the reasons above are linked to OCD…not you…but to OCD. I’ve known many authors who have written letters to their teenage selves. Here’s mine:
It is not hopeless. It will not always feel this endless. Someday you’ll find someone who you can tell all of this to, and they’ll understand. And that will lead to you telling other people. And even being alone will get easier because you’ll accept that your OCD is not you. You’ll know that you’re not dark. And you’ll believe that you are worthy of being loved…and being loved for exactly who you are–inside and outside. Someday, you’ll be glad that every time you considered suicide, you put it off until another day. That day will never come that suicide is the right answer. Better days are ahead. Believe in that…and believe you have something to give the world that makes your life precious because it is.
That control that seems every elusive–it’s always been inside you. You eventually can control the demon in your head because you’re the one who decided it wasn’t meant to be there. Someday, you’ll know that you are enough–that you were always enough–that everyone always thought you were enough. You were never alone–even if you were lonely–you just didn’t look around. Someday…you’ll discover that everyone is a little mad–and you’re a charming sort of crazy. And you’ll be happy. You will laugh every day–sometimes every hour. And you will cry when you look back and wish you really could send this letter to the girl you once were. It was never as bad as you thought it was, and it’ll be better than you could have imagined. It gets better–I swear.
And I take a deep breath, and post…and go to sleep. Hopefully. Geez, insomnia is vile.
*None of these posts on OCD can replicate or replace a visit to a health care professional and are my own personal experience and opinions. Please seek help if you feel you or someone you love needs it.*
Bless yer heart, that was a tough one, huh? There has been one suicide in my family, my brother’s daughter at nineteen, and he and I both are under a lot of mental health care for depression and anxiety. It does suck mightily sometimes.
Thanks for posting this. It does, so very oddly, help to know people I know and/or look up to deal with or have dealt with these feelings also.
I love when people say “bless your heart” to me. I always have. It makes me smile every time.
This was a really tough post to do, but with the high prevalence of suicide and my commitment to raising awareness, it had to be said. I’m always trying to say the things that I wish someone had said to me. I wish someone had said this stuff to me. The hormones of being a teen combined with OCD nearly killed me…and I feel lucky that it didn’t.
And this is searchable now…which was my goal. Hopefully someone who needs to see it will see it. If not, it was probably healthy for me to finally talk about it.
It was healthy for you to talk about OCD and suicide and it is invaluable for us to read it. Even someone without OCD can feel suicidal, and for you to reach out and tell people things like “it gets better” & “you are worthy of love” & “you are enough” is a mighty argument against ending it all. Bless.
I have never read anything about OCD that has touched me and tremendously impacted me as this post right here. I have read numerous books on OCD, and none such as this has brought me so much hope, understanding, and determination to go in and thrive. This post is so amazing. I can’t fine the adequate words to explain what reading this has done for me. It has made me not feel alone or lonely–scared that my OCD is causing pain to those around me and isolating myself as a result of it. The OCD does not define who I am. I define who I am and who I want to be. To know that someone is going through the exact internal struggle as I am calms me and fills me with a sense of “everything’s going to be alright. And not just alright–great.” Thank you for using your moment of OCD related weakness and turning it into a truly inspirational post. I am sure this has and will continue to benefit many who are going through this disorder.
What an amazing comment. This might be the most touching comment I’ve received on a subject that was really difficult for me as you’ve noted. Thank you so much for saying something. *hugs* I hope you continue to find strength to deal with OCD. It doesn’t define you. And you’re not alone. If you ever need support, you can email me using my contact page. Thank you again for a comment that helped me get through a rough couple days.
Wendy – Thank you for sharing! I am the mother of a teen daughter with OCD and your story resonates within our household. Your article has filled in the gaps that my daughter has not been able to articulate. As a mom, I want to do all I can to support my daughter and the first step is understanding what is going on in her mind. Your personals story has helped to do that. Will keep you in our prayers, bless your heart!
You are very welcome. I’m glad I could help. OCD is a very complex disorder and I think it must be even more complex if you’re on the outside looking in. My daughter has OCD and it’s made me very grateful to have OCD myself so I can understand. And my husband got the crash course on helping someone with OCD so he is really good at handling my daughter’s issues. I don’t think I could have articulated all of my issues at your daughter’s age…I didn’t have the life experience and I hadn’t seen the depth it could push me to. I pray that your daughter and mine never see the darkest reaches of this disorder, and I think knowing what is happening will help. Thank you for your comment. *hugs to you and your daughter* If you haven’t read the other posts on OCD in here, there are quite a few more that might help you.
Thankyou Wendy for writing what I feel I couldn’t. You explained your thoughts so well and it made me feel good enough to carry on. I was recently diagnosed with ocd after hiding it for years. I didn’t know what was wrong and I felt like I was going crazy but now I’m starting to understand that it wasn’t me, that it’s a delusional monster that is tucked up in your brain waiting to pounce. I have had a few suicidal thoughts and they were so intense and overwhelming that I thought of nothing else. I didn’t think a link between ocd and suicide existed but it has got to as I have so much to live for.. medication and therapy combined do help but I’m only a newbie to learning how complex this illness is. Every time you feel that you’ve had a good moment, a black cloud of doubt envelops you and robs the feeling of safety.. I will continue with your site as I believe that talking to physchs and doctors is not enough, you need to find someone who knows what ocd is like and who can express themselves so well like you have.. thankyou
Hey Lisa, that’s word-for-word what I would have said in my mid-twenties when I finally discovered what I had. I knew I was mentally ill but I thought I was just losing my mind to the darkness that I’d always felt. It’s hard…very hard some days to see the road ahead and know that this is the way things are and I’ve known moments where that road seems like too much. But there are others around you and there are better days and times when I even like some of the things that come with OCD. *hugs* If you ever need to talk, I’m on Twitter all the time or you can email me through the contact link on this site. Acceptance is a process and it sounds like you’re still in the shaky early days. It’ll get better and easier as you figure out what is your OCD and what is you and how to cope with all of it. Thank you so much for commenting and please get a hold of me if you need someone.
I just read this to my 17 yr old son who came to me tonight and told me he was too tired to go on fighting his OCD. He had secretly stopped taking his meds, because why bother, and couldn’t imagine a life in which he would always have OCD. Thank you for being brave enough to post this letter to your younger self. I had used many of those same words during our conversation, but hearing the thoughts and words from someone who had lived through what he is feeling today has had a stronger impact. Thank you.
Wow. I’m floored by this comment. I’m so glad it helped. Please tell him that someday he’ll be on the other side of this mountain and he’ll look back and recognize he always was a little stronger than he’d guessed. You hold on one for more day each day and then eventually your grip doesn’t have to be as tight and you actually like the person you are on the other side. I’m sorry it has to be so rough for some of us. My thoughts are with both of you. Please contact me if either of you need to talk. My email address is on my contact tab.
I am a 16 year old girl with OCD. I was diagnosed when I was 7. After many years of struggle medication came to my aid. I was an 8 year old girl plagued with the dark thoughts about poisoning people I cared about and obsessive hand washing until the skin on my hands was literally gone. I constantly thought things I didn’t want to. My rituals grew more intense. I have tried many medications. They work for a while. Therapy has never worked for me either.
Lately I have been having a really rough time. I am typically a very good student, but junior year has got me so stressed that my OCD is starting to take over again. I avoid so many responsibilities trying to deal with all the stuff going on in my head. This post gives me so much hope! There are days like today that I am convinced I am crazy. I got picked up from school because I was having such a hard time. I am so glad I am not alone. Because lord knows I feel alone.
You are most definitely not alone. OCD can be so brutal in alienating you from others. It’s difficult to imagine that “normal” people can understand the creeping, pervasive madness that is OCD. You feel so alone. But you’re not. This post gets the most hits on my blog…which is both sad and comforting to me. There are many others out there and easier days are ahead. *hugs* If you ever need to talk you can contact me through the tab on here with an email link. Give yourself credit for the days you’ve clawed your way through and compassion for the days you feel like quitting. OCD is not easy and you’re badass for tackling it day after day. I believe in you. Seriously, email me if you need to talk or vent or whatever.
One thing that keeps me going is the many developments in neuroscience and in technologies of the mind that promise to transform our understanding of and ability to treat mental health issues in the next generation or so. It is very much happening and it is not just wishful thinking on my part.
Actually, that’s a very good point. I see advancements in the understanding and treatment of mental health constantly. Better days are ahead in so many ways.
I am a 41 year old man in India. I have struggled with Ocd since age 15. I was diagnosed at age 27. And in last 14 years have taken a cocktail of drugs for that. I have tried every possible drug. Nothing ever worked. Drugs made everything far worse.
Recently read book –Anatomy of an epidemic. And also Books by Peter Breggin. To learn that there is no chemical imbalance proof and all these meds are just going to damage your brain and your body and make you chronically ill. This I can confirm from my own horrible experience with meds of the last 14 years. It’s just marketing and business for the big pharma. It stunned me and I slowly started weaning off my medicines.
Now I have nothing –no job, I am not married and never will. Ocd is still there.
There is hardly any good facility for the mentally ill in India.
Don’t know how to end my suffering
Sanjay, it’s been nice emailing back and forth further about this. I haven’t spent very much time examining how mental health is treated outside of the U.S. –I guess that’s indicative of my level of privilege and I should acknowledge and apologize for that. As you know, I don’t necessarily agree on medication but that’s for myself and I respect your opinion and I hope you find the right answer for you. Please email me in the future if you need someone to talk with. I hope you find a reason and a way to keep fighting.
nice to find your writing today Wendy. it is a nice boost. I am a 55 year old mental health therapist. I have had pure OCD since my teen years with different themes. the last few years the theme has been HOCD – fear of killing myself which is completely egodystonic although at times does not feel this way-like today. I can sure relate to the insomnia periods. I keep a little booklet with words, sentences, knowledge to help me keep centered. today I am adding ‘the lie’ from your writing.
I recently watched a youtube clip from a psychologist on OCD (can’t remember who) he mentioned that fear of killing self is never the first pure OCD theme someone will get. I found this very interesting. In recent years have taken more interest in philosophy and feel this may have stirred this inner doubt. interestingly my oldest son age 27 who is brilliant, lives in his head most of the time as opposed to his body has an pure OCD obsession about having a heart disease. I had the same type of pure OCD when I was his age.
My brother recently committed suicide at the young age of 22. He suffered from severe OCD and depression. He was a genius and could have been a great engineer or mathematician. For whatever reason, he decided he was done with all of the medication and therapy. I am glad you shed light on this issue and described what it is like to have OCD. Your message of hope and “it gets better” will hopefully save someone’s life in the future. Suicide is not the answer but I can’t relate to what OCD sufferers go through. I can relate to the pain of losing a loved one to mental illness and it is devastating. I hate OCD and mental illness and pray for a cure one day. Thanks for the post.
My condolences. I can’t imagine what you’re going through. The impact of both OCD and depression is swamping. My grandmother died in June and I’ve felt like an automaton most of the summer. I keep telling myself that those emotions (of emptiness and flatness) are part of my illness and not “real” but it’s hard to distinguish what the OCD says versus what is my realistic state of being. The emptiness and the hopelessness stretch on in my mind and fighting back takes a lot of effort on my part…and there have been times when that effort feels like too much. It’s not real. There’s hope and value and happiness around, but mental illness can be very persuasive. Again, I’m sorry for your loss. Suicide leaves behind so much regret and “if only I’d…” and “if only they’d.” I hope you find some peace in the future and consolation in the knowledge that OCD can be overwhelmingly traitorous and, even when surrounded by support and love, you can feel alone and rejected. Mental illness whispers lies that can be difficult to dispute in a troubled mind. *hugs* Thank you for commenting.