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  • Catherine Benfield

How does stigma and misconception affect those of us with OCD?

Updated: Dec 8, 2023

A fed up looking Olivia standing in front of OCD memes and 'jokes'

What's going on?

As those living with OCD, we can’t help but notice the misconceptions surrounding (and the general trivialisation of) OCD. Yes, that’s right folks, I’m talking the ‘I’m sooooooo OCD’ posts, the ‘OCD quizzes’ and the ‘Obsessive Cat Disorder’ type products!

Whether we’re looking for some support or help under ‘#ocd, flicking through our timelines, walking down shop aisles or having conversations with other people, the apparent lack of knowledge about what OCD actually is, is mind-blowing (before you feel too down-hearted, there are lots of people working on this, and things are changing 😊).

Another quick note, there is nothing more important in this world than you and your recovery work. It is so important to make that your priority over dealing with stigma and misconception.

Why is there so much stigma and misconception around OCD?

From my own personal experience, the reasons seem to fall into two main camps:

1) Lack of knowledge and awareness - Many people simply don’t know what OCD is. If they understand the obsessional part, they don’t understand how it links to compulsions, and if they recognise the signs of a compulsion, they don't understand the nature of the obsession driving the behaviour. They don’t realise that the ‘disorder’ part of the name means that the condition can impose on a person, and their life, to the point where both become unrecognisable.

In fact, many people living with OCD often don’t realise they have it and it often takes years to get diagnosed - even people who know they have the condition are unaware of the myriad of ways it can present itself.

2) It’s easy to use the name in the wrong way - In a way, I can understand the misconception. The word ‘obsessive’ has entered everyday language and is often used as a way of describing something that is very enjoyable or unforgettable, and ‘disorder’ seems to imply it’s enjoyed so much that it gets in the way of doing other things. In the case of ‘Obsessive Cat Disorder’, I love cats and I can see (just about) how someone with no understanding of what OCD is really like, would find it amusing and a teeny, weeny, weeny, weeny, bit relevant. Ah, it’s not easy getting those words out! The names of other conditions just can’t be manipulated in the same way.*

Why is it a problem?

1) It can block people getting information, support and help - Not everyone has reached the point of being comfortable getting outside help. For right or wrong, I spent a long time reading about OCD online before I spoke to my GP. ‘#OCD’ on any social media platform, is filled with misconception and these misconceptions may encourage people to put off seeking help, believing what they have is not OCD.

2) It encourages people to believe that OCD is less serious than it is - As we talked about above, people often don’t understand what OCD is and how it works. They do, however often believe that it is to do with organisation and cleaning (cleaning because they like things clean and shiny NOT obsession-driven cleaning). So very often these products and misconceptions have an almost completely blank canvas (apart from the already present misconceptions) on which to help people form opinions.

3) When people look for help, the severity is not always understood - If people are assuming that OCD is about organising, tidying or quirks they are less likely to give adequate support to those in need. When I started opening up about the severity of my condition people were astounded, they had no idea OCD could reach such levels of debilitation.

4) It spreads misconception - When I first started telling family and friends that I had OCD they were incredible. I don’t think they entirely knew what it was, but if it was making me suffer, they wanted to help and support me. Things got interesting as the people I told became more removed from my everyday life - acquaintances and the like. On a couple of occasions, the response was laughter. These were lovely, lovely people, they just completely misunderstood the condition and it's not surprising. For a long time the misconceptions of OCD were more prominent than the realities of the condition.

5) It makes many living with it feel awful - I personally don't like seeing the trivialisation of OCD. I understand that not everyone feels that way, but I find it hurtful - if not for me, then the others I know who live with the condition. It’s pretty hard to read the stories I do about the impact of OCD, and not feel defensive when faced with trivialisation.

Can and should we do anything about it?

We can always choose to educate if we want to - any of the points above provide a very good reason to challenge these issues. It does need to be, however, a personal choice; our best intentions aren’t always met with kindness. There’s a strong argument for focusing our energy on recovery and helping others. Living with OCD can be exhausting and our priorities may be better placed on getting well first, and then if we have a little spare time, dealing with these issues. I didn’t even think about addressing incorrect OCD posts until I was well along the road to recovery and even nowadays, I only do it when all my other boxes are ticked.

If you do decide to help spread awareness, here are some of the things I’ve learned along the way:

1) The best way is often to join forces - Your voice will have more impact and you are less likely to have to deal with any negative repercussions alone. An example of this is OCD-UK's recent work with The Range. They addressed the fact that the shop were selling 'Obsessive Cake (and Cat) Disorder' wall plaques. A great number of people came together to push awareness and it was solved by the shop removing and destroying the items. An amazing outcome. There's safety in numbers AND you're more likely to see a result.

2) ​Going alone is often time consuming and not for the faint-hearted - People often don’t like being corrected or told that their comments are hurtful so it’s usual to expect a range of responses, not all of them positive. Some people do admit they didn’t realise and apologise, others won’t respond but seemingly stop posting similar content. Others whip out their ‘PC brigade’ or ‘everything offends everyone these days’ comments. I’ll discuss these a little later.

3) The key is to be polite, respectful and help others to understand through education - This is something I normally manage although I do have the odd slip, especially when dealing with repeat offenders or cruel remarks. I mentioned earlier that people often aren't doing this out of spite, so a gentle mention of the realities of OCD is by far the approach I've found to be most effective.

4) Use email or private messaging - If people feel publicly shamed they are more likely to react negatively.

5) Keep previously written statements - I find that by having these saved somewhere I can easily adapt them for any situation. It saves me time and has the added benefit of preventing me from having to rewrite often upsetting parts of my past.

6) If you do find yourself on the receiving end of someone else’s inappropriate behaviour block them, report them and ignore them - It’s not easy but in my experience, it’s by far the best option. We’ve all got better things to spend our time on.

7) Above all else, think of you - I know I've mentioned this before but it really is so important. If you are likely to be triggered by a negative reaction to someones not so pleasant response, just don’t do it, it’s not worth it. Put your energy into recovery and staying well. Even if you're fighting fit, awareness work often brings up difficult memories so the best option may be to just leave it.

“… but I have OCD and I don’t find it offensive!”

I’ve seen this written a couple of times under posts and if that’s the case for you, it’s fantastic that you don’t have to deal with the negative emotions often involved in seeing these products, memes, comments, quizzes, etc. The problem is, is that this is an issue that's bigger than the individual. It's to do with the way our condition is viewed at a public level, because this public level can interfere with help-seeking, support and recovery. It's for this reason, that even if I didn’t find these things offensive personally, I’d still help to correct misconceptions and challenge trivialisation.

"Good grief, what a loads of moaners/easily offended types, milking their OCD…"

No one’s actually said this sentence to me but it includes three of my favourite not-so-polite responses. Whether you’ve contacted an individual, or they’ve just seen a post or comment on your page, you’re occasionally going to come across people who just don’t understand the problem. They, of course, don’t always let that stop them commenting!

Who says things like this?

  1. Those with OCD but who aren’t offended – see above.

  2. Those who think OCD is a quirk or trendy and enjoy spending time matching their underwear to their living room curtains or arranging biscuits so they look like flowers (that's right Khloe Kardashian, I'm looking at you here!).

  3. Those who simply don’t agree with, or are unaware of, ‘why it’s a problem’ – see above.

  4. Those who have OCPD or at least OCPD traits but believe they have OCD.

  5. People who are actually diagnosed with OCD but don't yet realise symptoms present in a wide range of different ways.

  6. Anyone up for a row!

How to deal with negative comments.

Again it’s totally up to you, but in my experience either ignoring or educating is the best response. I wrote a brief message about how I believe these OCD products affected my own diagnosis and recovery, and almost every post I commented with this on, deleted their hurtful claims. A calm, informed approach often gives little scope for continued misconception and trivialisation.

The role of humour in OCD

I know so many people within the OCD community who have a brilliant sense of humour and know how to laugh at themselves. I often have a little light- hearted dig at myself too because there are elements of my OCD that are completely ridiculous, and I find that laughing at it can reduce its power. Having dealt with the truly awful side of OCD, I feel I’ve earned the right to laugh at it.

Having said that, I wouldn’t dream of laughing at others. For a long time my OCD was anything but funny to me, and it’s important that I respect other people who may currently be in that situation. The people posting OCD jokes and selling OCD products do not consider the sufferer; they have not asked permission; they have not dealt with the challenging side of the condition, and it’s for that reason when I see them, my sense of humour wanes.

A positive note to end on...

As I mentioned at the top of the post, such a long, long, time ago... things are changing. Awareness is improving, people are starting to understand the reality of OCD and the impact it has on the lives of those who have it. As people open up more, word is spreading and for all the nonsense on social media, it has been extremely helpful for getting awareness out there quickly. It has allowed our community to unite, to challenge as part of a team, and to support each other when times get tough. It allows us to collectively address OCD stigma and misconception.

When I was hunting around for the images to go on the artwork for this post, I had more trouble finding content than usual. The google 'OCD' search had far more correct and helpful information under it than it did a year ago. When I clicked on the images in order to copy them, I could see they were often parts of posts questioning the appropriateness of the product or meme. Word is getting out! People are less likely to remain unchallenged about incorrect OCD posts and products and there's is absolutely no doubt in my mind that that is a great thing.

And that's that!

Let's go back to talking recovery.

Until the next time, keep well 😊

Cat x

Further Reading

Want to help beat OCD stigma? Fancy sharing your story, becoming an advocate or just helping out a charity? Read how here.

Although it's tempting to share your story to a large audience or to talk to the press to help educate people about OCD, it's not a decision that should be taken lightly. You must always protect yourself. Read all about it here.

*That of course doesn't mean that other mental health conditions escape inappropriate usage. Sadly, it's common place to see many others disorders misrepresented and trivialised too - the good news is these are being challenged too!

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