2015-10-12

My OCD story


This week is the international OCD awareness week, and as it is a special occasion I've decided to write a little bit about my own OCD. This is difficult for me to be open about, but I feel like it is something that I will do at some point, so why not now?

Before I start with my own experience with OCD I want to clear things up by defining what OCD is.
OCD stands for Obsessive Compulsive Disorder and is a debilitating mental disorder and anxiety disorder. It starts with obsessions, better described as intrusive thoughts. That is, thoughts that you don't want to have, usually something that makes you highly uncomfortable. These are thoughts that persist even when you try to ignore or confront them. On an intellectual level you know that the obsession is not corresponding with reality. The obsession causes great anxiety.

Some people only have the intrusive thoughts and might have no or mental compulsions. This is called Primarily Obsessional OCD, or Pure-O. Others with OCD will perform compulsions. Whether the compulsion is mental or not, it is performed because it decreases the anxiety that is brought on by the obsession. Sometimes an OCD sufferer will have to perform a compulsion just because it "feels right". The feeling is that the compulsive action will either relieve the obsession, or it feels necessary to act on it to avoid the dreaded intrusive thoughts.

Even though sufferers usually know that the compulsions are not necessary or exaggerated they will perform them as a sort of escape from the obsession, but the relief is only temporary. Compulsions are very different from habits that are done because you want to. Compulsions are performed because you feel like you have to. Habits bring efficiency to life, while compulsions disrupt life. Which leads us to the next characteristic of OCD. Which is that sufferers spend hours performing the compulsions every day. It's not a one time thing, but it interferes with life.

So now that we know what OCD is lets talk about what OCD is not.
OCD is not a quirk, or a trait. It does not have anything to do with being neat, organised or clean. It is not a superpower (as suggested by the tv-series Monk). Using OCD or any other mental disorder as a nickname for things that people do, think or say will minimise the disorder and increase stigma. It is done a lot, especially for OCD. My favourite tv-show Doctor Who has on multiple occasions joked about and trivialised OCD. But I think it is only because people do not really understand what the disorder is. My mission is to talk about OCD now, once and for all. Talk about how disruptive and debilitating it can be. So that maybe next time you hear someone say they are "so OCD" about something you can educate them.

My own OCD started almost seven years ago. It started very mildly with me being concerned about being "clean enough". I started avoiding shaking hands and touching door handles. Five years down the line my OCD had gotten to the point where everything was contaminated in my mind, I could no longer touch or be touched by anybody. I couldn't hug my own mother. The fear of germs and contamination made life difficult to the point where I was always scared when being around people, which is almost all the time. I would spend several hours of each day cleaning myself and my surroundings only to do it again the next day. When I was at my worst I washed my hands between 90-100 times a day. It was not very strange then that my hands had transformed, becoming red, inflamed and cracked. I bled from my hands about once a day. The picture that I accidentally took underneath this text shows my hands when they were really bad, but not their worst. It is not edited in any way and it even looks less horrible in the picture compared to reality.


I'm not showing a picture of my destroyed hands for you to feel sorry for me. I just wanted to show you that a mental illness can become something that affects your physical health. However the physical signs of the illness is nothing compared to what is going on inside of you. The fear and uncertainty is so real, and so extreme that it occupies all of your thoughts. And with that depression often follows. Depression is often seen in people with OCD and the writer of an OCD workbook described it like this: "Indeed, having OCD can be very depressive". Which as a sufferer of both, I can only say is true. My own OCD made me not be able to leave the flat eventually. I was housebound and completely unhappy, so my depression worsened and I became bedbound because I could not find any reason to get out of bed when it was a constant of cleaning and washing that was waiting for me. When I was at my worst I was suicidal, because I felt trapped in my mind and in my compulsions. The OCD affected and controlled all parts of my life. I had rituals for everything. I had to eat a certain way, wash a certain way, sleep a certain way, walk a certain way, just being was dictated by my illness. My life consisted of fear, anxiety, dark thoughts and my compulsions. It really was no life worth living at all...

I am very happy to be able to write that I am better now. I take two different types of medications against my OCD and depression and have started therapy successfully. I want all of you to know that you can hit rock bottom and then go even further down like I did and yet find a way back. I'm not cured, I still struggle with my OCD every minute of every day, but I have methods of coping, and I feel more free. That's why it is so important to talk about mental health, mental illness, suicidal thoughts, treatments and help. Because there is help out there!


If you want to know more about OCD I suggest that you check out the International OCD foundation: IOCDF

or OCD-UK

Another great place to quickly learn more about OCD is: That's OCD

This video by Hank Green and Crash Course also does a great job of describing the disorder and anxiety:


I hope you now understand what OCD is, and what it is not. I hope I have an ally in you in the fight against the stigma that is associated with mental illness. And I hope that you will carry on educating people and raising awareness about mental health and OCD.

Much love!

18 comments:

  1. Good for you for sharing this! I learned a lot reading this post and applaud your bravery for sharing. I don't have OCD but it bothers me tremendously when people are all "oh just me and my OCD, blerg!" when they're just talking about their organized book shelf or their super clean car. PLEASE! Ugh! I am a control freak and a perfectionist, but I don't go around saying I am OCD. It's become almost a joke? It sucks. Thanks for sharing again!

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    1. Thank you so much sweetie! I'm glad you learned something from this post, as it was my goal to hopefully educate. Thank you, I was/am so nervous about this post, so it means a lot.
      As a sufferer it bothers me too, very much. But I think the "joke" as it has unfortunately become, is only because people don't understand it. If more people understood it, maybe (hopefully) people will realise that it is nothing to joke about, and trivialising it the way they do when talking about their super clean car will be seen as wrong. It does suck though, just as you said! Thank you so much for your comment.
      Much love

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  2. It is so important that we talk about mental ilness without the stigma... thank you for being so bold and sharing your story, Mona. You are so powerful and empowering! I hope this post reaches many people and tell them something they need to learn, to be better humans.

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    1. Klara, I agree with you. Mental illness should be seen as what it is, an illness as any other. Oh, thanks! It wasn't very easy posting this, but I'm glad I did. Thank you so so much Klara. And thank you for your comment, it's very kind of you and it means a lot to me.
      Much love

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  3. Thank you for sharing this Mona, it's so important for others to understand more about OCD and how it makes people feel. When I was a little girl I was obsessed with being clean too, mostly just my hands. I had a special cream for teachers to put on my hands because I'd washed them so much in cold water. It was awful, so I can relate so much to this. I also had compulsions from a young age, I had to do things a certain way otherwise I thought someone I loved would die. I was lucky that it was mild for me and as I got older it got less and less until it became only one - tapping the point of scissors onto my palm before putting them down - otherwise I thought whoever they pointed at would die. Even though I know that's not true! I still do this sometimes more out of habit now I think as it doesn't bother me like before.
    I'm so happy that you're doing so much better now. You're amazing Mona!
    Sending love and hugs,
    Emma Xx

    www.emmaslookingglass.com

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    1. Thank you Emma! <3 I agree, we need to make people understand that it is a real and debilitating disorder.
      I'm so very sorry you have gone through that. Obsessions and compulsions are horrible and I wouldn't wish it on my worst enemy, let alone someone I care about like you. I am sooo sooo happy that it has become milder with time for you. And I wish it will leave you alone as soon as possible. When I was a kid I had mental compulsions, but they weren't very bad. It really was my contamination OCD that affected my life so very much, and got me depressed. But I'm doing much better. You are also amazing. Thank you so much for sharing with me what you have gone through. It makes me feel less alone in the disorder. And thank you so much for your sweet and meaningful comment. I really appreciate it.
      Sending much love back to you <3

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  4. I'm so glad you shared your story! The only way to get rid of stigma surrounding mental health is to talk about it.
    Also, congratulations on your road to recovery. I've only ever had mild mental health conditions which I found difficult to correct. I can't imagine how much it would have taken to ease your mind, and I'm so very glad you're in a better place :)

    <3

    http://theemeraldruby.com

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    1. Thank you so much Jennifer! <3
      I agree with you. We need to talk about it as much as we can.
      Thank you so very much, I feel like I'm finding the "old" me again, the one before the disorder. I'm so very sorry you've had mental health conditions, even mild ones are difficult and debilitating. I hope you will get better and better. Thanks once again, and thank you for commenting. I appreciate it very much. <3
      Much love to you!

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  5. So proud of you for posting this. It annoys me greatly when people throw the term OCD around without truly understanding what it means. I struggled more with OCD as a child, and was fortunate to grow out of it for the most part. It never escalated to the point where it drastically interfered with my daily life. I struggle more with Trichotillomania now, but had the more classic OCD behavior as a child (door locking, hand washing, etc.). I still have some lingering tendencies and intrusive thoughts, but it's quite manageable, for which I am very grateful. I'm so glad you've found treatments to help you cope and get your life back. xoxo
    PS: I wrote about my struggles with trichotillomania here if you would like to have a read.

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    1. Thank you so much Kathy <3 It means so much coming from you. I'm so happy you "grew out" of OCD, but I am also so very very sorry for your struggles with Trich. I read your very brave and illuminating post on Trich and the OCD part of it, of pulling out an even number is something I do still with my washing. I wash in even numbers, and clean in even numbers, which is ridiculous, but I feel like I have to. No one will understand that better than you I suppose. I do feel less alone when I hear about others with OCD spectrum disorders, so thank you so much for writing a comment and sharing your story with me. It means so much to me, and I appreciate it a lot.
      Thank you, I'm very happy that I'm getting my life back too. And just as you said in your post, we will probably always struggle with our conditions but sharing our stories is important. I wish you all the best in your fight against Trich. You are beautiful and strong, and I have a great deal of respect and admiration for you.
      So much love to you!

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  6. Beautifully written, Mona. Thank you for sharing your story and speaking openly about mental health, I know you will be helping many people with posts like these. Sending big hugs to you x

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    1. Thank you so much Eilidh <3
      I really do hope it helps someone out there, because hiding it and feeling ashamed is one of the toughest bits of having a mental illness, and if I can change that for anyone I will be very happy.
      Much love to you!

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  7. Thank you so much for sharing your story, Mona. You are such a brave, strong woman! These posts are so important to removing the stigma surrounding mental health. It's so refreshing to read your posts on mental health, too, because you are always so understanding of the world's lack of knowledge surrounding these issues. And you never blame anyone or get mad at them for this - truly inspirational! Instead, you take it upon yourself to help the world better understand these important issues. That is truly remarkable, and I can't tell you how much I admire you, Mona!

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    1. Thank you so much Lindsey! I don't know about that, but thanks :)
      I agree, it's important to talk about mental health. Oh thanks, I try my best to remember how I used to think before I became a sufferer, and it's not easy knowing about every disease/disorder out there. As long as we keep an open mind and don't judge we're doing great in my opinion.
      Oh gosh. You're making me tear up. Thank you. You have no idea how much it means to me to hear you say that. I really appreciate your comment and your sweet words. Thank you so very much and much love to you Lindsey! <3

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  8. I am so grateful when you write posts like this--the fact that you are both raising awareness for and educating on all kinds of topics makes you a superhero! Your struggle with OCD has been formidable, and I'm so happy to see you making great progress. I know it takes a LOT to be able to write about your struggle so openly, but I think you're doing so much good for others. Until recently, I didn't know much about OCD or how it's treated or what sufferers go through, but mainly because of you, I have a greater understanding for that particular illness as well as others. On top of that, I think it helps to break the stigma against mental illnesses--when you see someone you care about and whom you admire speaking up about it, it stops being something to hide. So thank you--you're doing really great work.

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    1. Aww, you are too sweet, I must say I really would like being a superhero, so I'll take it with a bow! :D
      Thank you darling, I'm very happy for my progress to. Thanks, I hope so, I hope writing about it openly will lead to something good for someone.
      It means the world to me that you know more about OCD because of me. That's part of what I want, to raise awareness.
      You are the sweetest, thank you so much, your kind words have warmed my heart and I feel emotional now (haha). Thank you so much for commenting, and for being so kind! You are golden! Lots of love to you!

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  9. You educated me, thank you.

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    1. That makes me very happy to hear! Thank you for having an open mind!
      Much love

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