Coffee lounge
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Receiving too many notifications? Adjust your notification settings.

What is OCD to you?

Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,940 Scope community team
People still think OCD means being neat, tidy, clean and organised. We need to say to them, ‘think again!’. We need to tell them that Obsessive Compulsive Disorder is a seriously debilitating disorder which leads the sufferer to having unwanted debilitating intrusive thoughts rendering day-to-day life a living nightmare. That’s OCD!
There's a common misconception about OCD —a bugbear of mine, if you will— that OCD is only ever all about being especially neat, that everyone with OCD is Monica Geller with rubber gloves and anti-bac spray. :wink:

This week is National OCD Awareness Week and to raise awareness of the condition, OCD-UK are focusing this year's efforts on busting the myths that surround the condition.
Do you know anyone with OCD? Do you currently live with the condition? How do you self-care? Tell us in the comments below!
Senior Community Partner
Scope

If you have a few minutes to spare, we'd appreciate your feedback on our online community.

Replies

  • Ami2301Ami2301 Community champion Posts: 7,139 Disability Gamechanger
    I did have OCD really bad years ago, tied in with my fear of being sick, I had to constantly seek reassurance that food was cooked properly (not my cooking, everyone elses) and anything it touched i needed to know that it was thoroughly clean beforehand. If it was someone else cooking (that I didn't know of or don't trust them) then I would ask whoever was with me, to try the food first.

    Thankfully I overcame the majority of it and nowhere near as bad as I was.
    Community Champion
    Disability Gamechanger - 2019
  • 66Mustang66Mustang Member Posts: 4,289 Disability Gamechanger
    I have severe OCD and I don’t care about germs, am an untidy person, and my appearance is unkempt!
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    My husband has OCD when it comes to tidying. 
  • OverlyAnxiousOverlyAnxious Member Posts: 1,136 Disability Gamechanger
    edited October 2019
    OCD to me is an absolute...actually, I can't think of a pre-watershed word! :D  It has robbed me of any sort of life, and been with for me for so long that I never developed a personality...  OCD really is my life, controlling everything I do all day, every day.  There's no break from it.

    I don't have any rubber gloves, I actually find them a trigger as they 'hold' any contaminants from the previous cleaning job.  I am heavy handed with the anti-bac spray though! :p

    Unfortunately I am a fairly typical OCD stereotype, massive fear of anything entering or touching my body that could cause harm, so keep everything clean, neat & tidy and avoid as much risk as I can every day.  Some of you will appreciate my current avatar now...  ;)  

    But on a really serious note, the side of my OCD that I don't tell people about is the dark intrusive thoughts.  Really horrible, awful, disgusting thoughts that are often immoral, illegal and utterly horrific.  I would never tell any 'normal' person about them as there's no way for them to understand that this can be caused by the power of the OCD mind, and NOT necessarily part of that persons 'real' mind...but I don't even trust that to be true, so how could they?  I think this is why the OCD stereotype is usually around cleaning, or tapping, or counting, as at least they're acceptable things...  I was in my 20's before I saw a TV programme that did discuss intrusive thoughts...and I finally realised that maybe I'm not the terrible person I had been thinking for all those years!  But that still doesn't make the thoughts any easier to cope with, and it doesn't stop the huge amounts of guilt I feel because of them.  It's also not something I'd ever discuss or even mention to a therapist for fear of being misunderstood.

    As for breaking stereotypes...I actually like working on cars or doing the garden...although always with thick gloves, long sleeves, avoiding risks from sharp objects/power tools and not getting dirt on my skin...and then straight in the shower afterwards, so I'm not quite sure that breaks the stereotype! :D
  • Chloe_ScopeChloe_Scope Scope Posts: 10,662 Disability Gamechanger
    My brother has OCD which is linked to his Aspergers. This can make the simplest of things, like crossing a road, stressful if he doesn't do it 'right'. This would cause him to be stuck and have to do it again.

    He also has just specific things he has to do (like flicking light switches on and off every time he walks into the room) and this can make it hard for him leave the house quickly.

    In terms of the stereotypes, he's currently at uni and I would be surprised if knew where the anti-bac was!  :s
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • 66Mustang66Mustang Member Posts: 4,289 Disability Gamechanger
    OverlyAnxious - I’m interested in the “Intrusive thoughts”. I’m not sure if what I get is similar. 

    I always have fears that I am going to do things I don’t want to/shouldn’t/mustn’t do. It could be something as simple as knocking a glass of drink over or shouting out during an assembly, but the worst is while driving where I am fearful that I am going to turn the steering wheel to the left or right and crash the car. 

    The best way to describe the thoughts is if someone gave me a button and said it didn’t do anything, I could ignore it; but if they said pressing it would result in something bad, I’d constantly be terrified that I’m going to press the button even though I don’t want to.

    Is this what you mean by intrusive thoughts or was it something different for you?

    Also, I totally get what you mean when you say these things don’t let you develop a personality - they sort of become your personality. 
  • OverlyAnxiousOverlyAnxious Member Posts: 1,136 Disability Gamechanger
    @66Mustang  

    I recently saw this video which explains the intrusive thoughts quite well, much better than I can explain them!  - https://www.bbc.co.uk/news/av/stories-49501432/cure-my-ocd-i-thought-i-d-killed-someone

    I get a lot of obsessive intrusive thoughts while driving unfortunately, things like running pedestrians over and knocking cyclists off...and then I'll have to keep checking whether or not I've done that as a compulsion.  Obviously it's not always possible to check though, and that is when the thoughts start spiralling out of control.  I do have a dashcam and often check the footage, I know it's reassurance seeking and not helpful long term but it's the only short term fix for when I'm already feeling bad enough not to fight it.  

    It's not just my actions either, it's inactions as well...for example I often feel if I don't stop to let pedestrians cross, they will cross behind me and a following car will hit them, and that will have been my fault.  Or when on foot, if I see broken glass on the pavement, I'll get a very strong visual thought about that going through my sole and...well, you can guess.  But I also feel I can't leave it there as the harm will come to someone else, and that will have been my fault through inaction.  But I also can't touch it and move it due to the thoughts about contamination and getting cut and infected...  A simple walk around the block is exhausting.  

    They do get a lot deeper and darker than that, but I don't wish to discuss those ones.  There is quite a bit of info online about it if you want to search but bear in mind it can add triggers that you don't already have. :)  
  • 66Mustang66Mustang Member Posts: 4,289 Disability Gamechanger
    I remember that BBC video, I thought it was quite good, very informative. Sorry to hear you are going through that.

    I don’t know of anyone with the form of thoughts I have, never seen it mentioned on the news or anything, but the doctors tell me they are common thoughts and that everyone gets them! I am on the waiting list to try some CBT to see if that helps but I’m not sure if it will or not. 
  • OverlyAnxiousOverlyAnxious Member Posts: 1,136 Disability Gamechanger
    66Mustang said:
    I remember that BBC video, I thought it was quite good, very informative. Sorry to hear you are going through that.

    I don’t know of anyone with the form of thoughts I have, never seen it mentioned on the news or anything, but the doctors tell me they are common thoughts and that everyone gets them! I am on the waiting list to try some CBT to see if that helps but I’m not sure if it will or not. 
    Have you tried CBT before at all?  I haven't found it useful myself so far (3 different attempts across the last 8 years), but do know people that have so it's always worth a try!  Hopefully you haven't got too much longer to wait!  
  • 66Mustang66Mustang Member Posts: 4,289 Disability Gamechanger
    I have tried CBT before for social anxiety and contamination OCD but I’m not really sure if it helped or not, or if it was just pushing myself that did the trick. For example the CBT person had me go into a coffee shop (something which caused me anxiety) and once I’d done it a few times the anxiety went down, but I didn’t particularly use any of their CBT techniques, I think just practising going into the coffee shop was what helped if that makes sense!
  • Silver925Silver925 Member Posts: 87 Courageous
    OCD to me was a total nightmare. I count get out and about or out of bed because I new I would have to start my rituals. Safety behaviour and doing things not related to your anxiety to stay safe. It is a very strange affliction which can take many forms.
  • WhileIBreathIHopeWhileIBreathIHope Member - under moderation Posts: 216 Pioneering
    edited October 2019
    Checking a door I know is locked.
    working on projects for 24-48 hours until it works- can’t do this anymore as end up flat on my back passed out.
    Find any way not to touch a door handle after washing hands at public convenience.
    writing a list to stay on track and taking days or even a week to manage some tasks.

    acting in a timely manner, either I won’t sleep over it and need to get it done or struggling to get it done at all. Taken me a month to do a project in an afternoon as simply felt rough or it rained.
    took 3 years to paint some garage doors and three weeks to buy paint and plan to paint them
  • OverlyAnxiousOverlyAnxious Member Posts: 1,136 Disability Gamechanger
    66Mustang said:
    I have tried CBT before for social anxiety and contamination OCD but I’m not really sure if it helped or not, or if it was just pushing myself that did the trick. For example the CBT person had me go into a coffee shop (something which caused me anxiety) and once I’d done it a few times the anxiety went down, but I didn’t particularly use any of their CBT techniques, I think just practising going into the coffee shop was what helped if that makes sense!
    Ah, that's interesting, the Coffee shop must be a standard CBT thing...  I was also suggested to go to one in my first session back in about 2011.  I don't even like coffee though and can't drink anything away from home due to contam & IBS anyway.  Also didn't have any coffee shops in the small village where I lived and couldn't afford the fuel to town & back for non-essential trips like that.  For me, the anxiety never did drop whilst out though...which I've only more recently realised was caused by agoraphobia which hadn't even been suggested at the time.

    I completely agree keep pushing yourself to keep doing things helps.  When I received a bit of inheritance and moved out, I was able to do quite a bit for the first 6 months that I hadn't ever been able to do before...I didn't switch the Xbox on at all for about 4 months and was rarely on any forums! Once that money had gone and I was back to living on a shoestring, even tighter budget than before, I stopped being able to afford to go anywhere or do anything non-essential and without realising it, ended up just as bad as before.  It's a difficult one though, I know I'd be better off mentally if I had more money and a good reason to keep going out regularly, and that the rare occasion I push myself out currently will always go badly because there's no 'constant' to keep the anxiety levels manageable, but I also know I'll never be able to work which is the only thing that would give a daily reason to get out and a bit of disposable income. :|
  • 66Mustang66Mustang Member Posts: 4,289 Disability Gamechanger
    r.e. pushing yourself one thing I am constantly told by professionals is that it is all about the comfort zone. If you stay within it it gets smaller, so there will be less and less things you feel comfortable doing, you have to “maintain” it by continuing to push the boundaries. This kind of sounds like what happened to you when you ran out of money to do things?

    I’m not sure this approach will work with the intrusive thoughts I get as I seem to get them at random and regardless of how much I have done an activity, but keeping an open mind that the CBT will work.
  • WhileIBreathIHopeWhileIBreathIHope Member - under moderation Posts: 216 Pioneering
    66Mustang said:
    r.e. pushing yourself one thing I am constantly told by professionals is that it is all about the comfort zone. If you stay within it it gets smaller, so there will be less and less things you feel comfortable doing, you have to “maintain” it by continuing to push the boundaries. This kind of sounds like what happened to you when you ran out of money to do things?

    I’m not sure this approach will work with the intrusive thoughts I get as I seem to get them at random and regardless of how much I have done an activity, but keeping an open mind that the CBT will work.
    The problem as I see it is society only wants to partially recognise disability and by this I mean you need a ramp to access a building that’s fine.

    However a System designed to either completely write off people and lock them fearful of reprisals if they try anything to better themselves participating in society.
    The system that pays out below the cost of living and poverty.

    Money was will not cure all the worlds ills, but knowing you can put food on the table and turn the heating on without debts is enabling.

    Way it is going at my place I will be burning free pallet wood in a wood stove over winter by looks of it.

    OCD wise I have special interests and forget to eat if wrapped up in them, I have GB’s of pdf reports on scientific and military items I will never own.

    I read instruction manuals occasionally for something I will never physically have access to or own.




  • WhileIBreathIHopeWhileIBreathIHope Member - under moderation Posts: 216 Pioneering
    66Mustang said:
    I have tried CBT before for social anxiety and contamination OCD but I’m not really sure if it helped or not, or if it was just pushing myself that did the trick. For example the CBT person had me go into a coffee shop (something which caused me anxiety) and once I’d done it a few times the anxiety went down, but I didn’t particularly use any of their CBT techniques, I think just practising going into the coffee shop was what helped if that makes sense!
    Ah, that's interesting, the Coffee shop must be a standard CBT thing...  I was also suggested to go to one in my first session back in about 2011.  I don't even like coffee though and can't drink anything away from home due to contam & IBS anyway.  Also didn't have any coffee shops in the small village where I lived and couldn't afford the fuel to town & back for non-essential trips like that.  For me, the anxiety never did drop whilst out though...which I've only more recently realised was caused by agoraphobia which hadn't even been suggested at the time.

    I completely agree keep pushing yourself to keep doing things helps.  When I received a bit of inheritance and moved out, I was able to do quite a bit for the first 6 months that I hadn't ever been able to do before...I didn't switch the Xbox on at all for about 4 months and was rarely on any forums! Once that money had gone and I was back to living on a shoestring, even tighter budget than before, I stopped being able to afford to go anywhere or do anything non-essential and without realising it, ended up just as bad as before.  It's a difficult one though, I know I'd be better off mentally if I had more money and a good reason to keep going out regularly, and that the rare occasion I push myself out currently will always go badly because there's no 'constant' to keep the anxiety levels manageable, but I also know I'll never be able to work which is the only thing that would give a daily reason to get out and a bit of disposable income. :|

    I was going to suggest volunteering, but that is a risk of being manipulated or used from my experience.
    BUT I do have a good idea,
    you have internet access so see what clubs are run from local community centres/arts centres etc as locally there is everything from model making, amateur dramatics, crafting (not sure exactly what this is seems a broad mixture of card making, paper art etc)
    There is something called Men’s Shed / Woman’s Shed- I think it is like an adult youth club crossed with a wood working, knitting and model making group.

    Club I go to twice a month and £4 month and you get Hot chocolate and a biscuit/small cake if you want it.
  • dolfrogdolfrog Member Posts: 434 Pioneering
    edited October 2019
    Hi All

    some members of my family have various OCD issues, and to help me understand their issues i did what i usually do try to find some research to help explain the issues.
    I found this research paper a couple of years ago which you may dind of some interest.
    Clinical practice guidelines for Obsessive-Compulsive Disorder
  • JurphJurph Member Posts: 346 Pioneering
    I have OCD tendencies but don't consider myself to suffer from it. 

    My pain specialist picked up on it but there are certain things I'm a perfectionist on.

    Being aware of it has helped me to recognize when it becomes an issue. For example I go through a bottle of lens cleaner a week as I can't cope with dirty glasses. Rain specs, spec of dirt etc drive me insane. So much so that I often don't wear them.

    I have no issues with that same dirt or dust on anything else. 
Sign in or join us to comment.