What it feels like to live with OCD - My OCD Community

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What it feels like to live with OCD

123Chocolatelover profile image
16 Replies

Hello everyone! I hope you all are doing well.

If you don't mind, I would like to ask what living with OCD feels like internally.

I have OCD, and I have always heard so many misconceptions about it everywhere. Be it in the media, or just a classmate stating that they are "So OCD" because they like to organize things.

Recently, I had the opportunity to do a research project, and I decided to focus on OCD, to research it further for myself (since I have it), and to educate others about the reality of it. In the first section, I want to talk about the misconceptions surrounding it and talk about how it really affects people.

So if you don't mind contributing (this will of course remain anonymous), could you please write a statement on how it feels like to have OCD? A short statement would be optimal. It could be something like "OCD feels like __", "OCD is __", or anything you think would encapsulate your feelings and be impactful.

Thank you so much for helping me out. Each of your contributions is truly appreciated, and will have a great impact!

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123Chocolatelover profile image
123Chocolatelover
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16 Replies
Downinil profile image
Downinil

You ask what it feels like to have OCD. I have a severe case of it. It is like once I have a thought it is repeated in my mind like a broken record. It is also very disturbing to feel overwhelmed with the need to turn light switches off and on repeatedly in four sets of four or when I go to touch something to pick it up I can’t stop repeatedly touching it in for sets of four before I can, actually complete the task of say like picking up a glass of water I have to tap it in that sequence before actually taking a sip.

123Chocolatelover profile image
123Chocolatelover in reply to Downinil

Thank you so much for your reply. I am also so sorry that you feel this way. This condition can truly be paralyzing. I hope you can access the resources you need to cope with it.

Downinil profile image
Downinil in reply to 123Chocolatelover

I have been in treatment for 44 years. I’ve undergone a complete Cingulotomy (brain surgery) in an attempt to manage it. My symptoms have become less obvious but the disturbing thoughts are still an issue.

123Chocolatelover profile image
123Chocolatelover in reply to Downinil

I truly hope you feel better soon.

Downinil profile image
Downinil in reply to 123Chocolatelover

Thank you.

TomFed profile image
TomFed

Unmanaged OCD often feels like hell when it's on spike. Real hell.. The flow of intrusive thoughts can really be paralysing. The anxiety produced when you try to fight off your obsessive mind, as you don't know how to deal with it, is overwhelming. I myself developed alcohol addiction which almost killed me while trying to self medicate OCD, and had a very messy life for many years.. But finally, I came to the point where I couldn't fight it by myself anymore, and reached out for help. Best decision in my life together with recovering from alcohol addiction.. With ERP therapy and the right tools it is a very treatable disorder in many cases. And it can bring you to profound insights about your own mind and who you are beyond the mind. After decades of suffering, now I find myself in quite a peaceful place on many of the days (although OCD is lying dormant, trying to kick back). Peaceful mind is a priceless gift and achievement for any OCDer.

123Chocolatelover profile image
123Chocolatelover in reply to TomFed

Thank you so much for your insight. I am glad you were able to find help when you needed it most!

beth196 profile image
beth196

When OCD is at its worse, It feels like you have no control and you just want to feel normal, The thoughts will not let you rest they are with you morning, noon and night. the power is unreal. Then you get on Meds, and u can see things realistically again, but still fear the loss of control and what it can do to you. I was stable on Lexapro for 10 years and it stopped working. It was awful, then I tried to do erp by myself with minimal meds and it drove me nuts. I have a really happy life and alot of self esteem. I needed to go back on prozac 40mg to settle it down with clonazepam. I'm weaning off the clonazepam slowly. I can do erp when on meds. I'm grateful these meds work for me. OCD has made me cry. Meds make me feel normal and I'm so grateful since OCD sucks

123Chocolatelover profile image
123Chocolatelover in reply to beth196

Thank you so much. Your insight is truly helpful!

IStillHaveHope profile image
IStillHaveHope

I've tried to describe what OCD feels like to other people, but I feel like if you don't have it, you can't really understand it. It feels like you're mind has betrayed you. I'll try this metaphor.

Imagine you apply for a job and show up your first day. Your boss leads you to the outside of a warehouse. No windows and only one door in. He opens the door and escorts you in. Inside it is littered with boxes and shelves and furniture piled messy and high everywhere. You navigate this maze like layout and find a small desk pushed up against the far wall. He tells you, you will do your work here, your back facing that entire mess you just came through. He now says he's going to leave and when he goes he'll shut off the lights making the entire warehouse dark. You will have a small lamp on your desk that will give you some illumination to work. Oh and before he leaves he tells you, "By the way. There is a large and very hungry tiger somewhere in this warehouse. It's eaten all the other employees, but I'm sure you'll be fine.". He then leaves and, as he told you, shuts off all the lights.

Tell me, how many times are you going to check over your shoulder? How much work are you going to get done? Are you going to be able to think about anything at all except that tiger? That is what an OCD though feels like to me at its worst.

123Chocolatelover profile image
123Chocolatelover in reply to IStillHaveHope

Thank you for your reply. The analogy really helps visualize the disorder.

Natureloverpeace profile image
Natureloverpeace

Before recovery, OCD slowly began shrinking my world. It took away what I value the most. I was doing compulsions all of my waking hours and couldn’t function in a meaningful way. I couldn’t work anymore and was socially isolated. It took the pleasure out of living and I didn’t see the point of living anymore. The devastation and hopelessness from OCD grew for about 40 years until I did effective treatment for it. It’s in remission but I maintain an active recovery to keep it that way.

weymouth321 profile image
weymouth321

OCD isolates one - I guess this is a throwback to anorexia , but then I’ve always required my space to be clean and orderly since childhood.

I now live alone - it’s gotten better over the years , but I still tend to get pretty anxious when having workmen in to service the kitchen boiler, for example . I just want them to get the job done and get the hell out. Then clean clean clean . So yes, family were never invited - they were brilliant and humoured me.

I always wash my library books. I never eat in cafes or restaurants. I take items from the back shelves when shopping. I always have to wipe everything before putting items away. I dislike anyone getting too close ( contamination )

It has never prevented me from working full time and earning a living.

I had a school friend whom I used to cycle up to visit at the next Village - I never understood it then , but she never ever invited me inside. ( Being 14- 15 years , early 1970s ) - never thought it strange then !

i am so used to it i cant imagine my life living any other way. i went trough a healthy anxiety episode where i went to the doctor everyday for 3 months and everyday i was scared of having a different illness. the doctors were getting more and more annoyed about it everyday. at the time it wasn't fun but now when i look back i find it funny.

DadGuy profile image
DadGuy

I'm 41 and for me OCD is like a voice in my head, whose job is to make me feel guilty, shameful, worried and doubtful of my own intentions and decisions. Doubt to a degree most people would never imagine. There are moments in life that are calm enough that I almost forget I have it. But when the pressure and volume of life gets louder, so does the voice. It latches on to stress like a tick. Anxiety rises, depression occurs. Negative thought loops and imagined conversations get worse. My kids sound so loud on top of the noise already in my head. For me all the actual rituals like washing hands were long ago replaced with purely mental agony. I'm had success in life but damn it's all so hard to maintain mentally sometimes. I take 3 medicines that barely take the edge off and see a therapists with little knowledge of OCD. By middle school I got good at hiding it and no one would ever know I have it. It's the imaginary friend that means me harm. I've heard great things about ERP therapy and am currently searching for a psychologist who practices this, not easy either.

Susiesweeney profile image
Susiesweeney

Ocd feels like living another nightmare life on the inside of ur mind that no one can see. So you have your day to day life work socialising etc but all the time there is another horrible life in your mind making you thing horrendous things about yourself and others.

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