OCD Sufferer, an OC, or a Person with OCD?

by stuart miles freedigitalphotos.net

by stuart miles freedigitalphotos.net

If you’ve been reading my blog for a while, you probably know I’ve used the term “OCD sufferer” quite a bit. I felt it was a more respectful way to describe someone with OCD, as opposed to “an obsessive-compulsive” which always makes me cringe. I have noticed, however, that a good number of bloggers I follow who have OCD refer to themselves as “obsessive-compulsives” or “OC’s.”

So what’s correct, respectful, appropriate??? Obviously, it depends who you ask.

Recently, Lorre Leon Mendelson, who is a reader of my blog, introduced me to the concept of People First Language, which simply put, is about putting the focus on people first, not their disability. Attention is given to the whole person, who of course is much more than his or her disability. So, using People First Language, I would say, “the person with OCD,”  instead of “OCD sufferer.” Another point Lorre brought up is that not everyone with OCD is suffering all of the time, and being labeled a victim or a sufferer might “imply a lesser position in equality to people without OCD.”

My guess is some people would say I’m splitting hairs here, and as long as we are well- intentioned and treat people with respect, our choice of words shouldn’t matter much. But I do think the words we use, and how we use them, matter. I am a writer after all, and writers are always searching for the right words to use at the right time. Over the years, I’ve blogged about the choice of words, from the misuse of the term OCD, to my recent post on using the term mental illness. Perhaps the post that best illustrates how powerful word choices can be is this one, where we see how the word “the” changes everything.

I have started to use People First Language in my posts, and so far am pleased with the change. I do think this language has the potential to affect the way we view people with various disabilities or illnesses. And better yet, it might just have the power to change the way people see themselves.

I’d love to hear your thoughts, and word preferences, on this subject!

 

 

 

 

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30 Responses to OCD Sufferer, an OC, or a Person with OCD?

  1. This is an interesting question to consider. I like the idea of People First and do see myself and others with OCD as “people with OCD.” But I have used the term OCDers to refer to those of us with OCD, without meaning any disrespect. I always want to show respect in my writing, and you have reminded me to think twice about how I refer to people with OCD. It doesn’t bother me if I am referred to as an OC or OCDer, but it might bother others.

    • Thanks for sharing your thoughts, Tina. I think you hit the nail on the head with your last sentence; each person will have his or her own preferences. That certainly doesn’t make it easy to keep everyone happy! We do the best we can, right?

  2. Jackie Saulmon Ramirez says:

    Volunteering with a nonprofit I learned many years ago I learned that a person is always referred to before their disability or condition. The only exception would be if it were in generic terms and only after I have used ‘people first.’

    Example:

    “This comment is about identifying people with disabilities. Disabled people deserve the same respect as a person without disabilities.”

    The other option you mention, OCDers, is one I am familiars with but I would only ever use that informally with my friends when they or I refer to a friend or family member with a condition such as ADHDers, OCDers and so on. The key, I would think, is whether it is formal or informal.

  3. Rex says:

    We are all OCD to greater or lesser degrees. Maybe Disorder is the wrong term. Maybe Tendency should be the term. OCT. Labeling often creates self-fullfilling actions. Just a thought.

    • Thanks for your comment, Rex, though I respectfully disagree. That is where the misunderstanding about OCD comes in quite a bit. Many people deal with obsessive and/or compulsive thoughts and behaviors, but that does not mean they suffer from obsessive-compulsive disorder. The lives of people who have OCD are greatly affected by the disorder, some to the point of non-functioning. My son was one of these people. He does not have obsessive-compulsive tendencies. He has OCD, a very real illness.

  4. I’m someone who referred to our community as “obsessive-compulsives” for a while before a few people told me it bothered them, so I stopped. It didn’t bother me. I think, as a writer, I was trying to find the easiest way to say it in as few words as possible. To me, “people with OCD” is a mouthful. That said, I respect the idea of people first. On my blog, I tend to use “OCD sufferers” because it’s an inherent reminder that OCD hurts.

    It’s something that’s always brewing in my head, after a few people talked to me about my language!

  5. Em Jack says:

    Hi Janet –

    I am very happy you have started a conversation about the words we use when talking about “brain based disorders” (I personally like this terminology).

    As someone who lives with & at times suffers with BP2 & a mother of a dd with severe OCD this is important to me. In using appropriate language & references to brain disorders I believe will be the catalyst necessary to begin change in how the medical realm, insurance realm, media (especially helpful domain) & the general population regard brain based disorders.

    I know when I am at my doctors office or hospital & they go through my health history & eval process I am often asked other than your mental illness, do you have any concerns about your physical health. I am always sure to point out that the brain disorder BP2 that I have is a physical illness. This is usually met with a bit of embarrassment.

    I tend to use terms like I live with BP2 or my dd is learning skills to fight or manage the OCD (not her OCD).

    All in all … thank you once agsin, Janet for raising awareness in the world of brain base disorders.

    Em

    • Thanks for your kind words and for sharing, Em. As you probably know, I completely agree with you about the use of the term “brain disorders” as opposed to “mental illness.” Yes, words really do matter!

  6. I use people first language because I feel it’s right and true and it was also apart of my training as an early childhood educator. I try very hard to say “I experience” or “I’m labeled with”. I don’t have a problem with identifying with BPD either, the same way I would identify as being a woman.

    • Em Jack says:

      I am intrigued by your closing statement, ” I don’t have a problem with identifying with BPD either, the same way I would identify as being a woman.”

      I don’t mean to be obtuse but I would love to hear you expound on this statement.

      Em

    • Thanks for sharing, Kristen. I like the use of “I experience…” which really separates the person from the illness or whatever label is being used.

  7. Wiggle Worm says:

    I prefer the phrase I am OCD, or she is an OCD-er…but I agree that it shouldn’t matter so much what words we use as long as we know what we mean and mean it respectfully.

    • Thanks for sharing, Wiggle Worm, and your comment also shows how people have such varied preferences. Most people with OCD, in my experience, would not be happy with the phrase “I am OCD.”

  8. I remember a time when people started using better language to describe a person with a cronic physical illness like diabetes. Calling someone a diabetic was only identifying with their illness, not with them as a person. So we were supposed to say ‘ a person who has diabetes’, or a person with xxx. I am not my ocd, i am a person with ocd. At some times it is stronger than at others. But i like to be seen as a person first. It takes a little longer to write, but reminds me that i am more than just my illness.

    I also think it is time for these so-called mental illness, to get a better name. My IQ is just fine, thanks. A person with mental disabilites is one who is slower than others their age group. So how can this term be used with brain disorders? Being called mentally ill sounds like i am a step or 2 away from going crazy and shooting everyone, not something i am particularly thrilled to tell people. So while i am pretty comfortable saying i have a problem with anxiety, or that i have OCD, i don’t really enjoy being labeled mentally ill.

    • Oh, I so agree with everything you say, Karin, and appreciate your sharing. The connotation of “mental illness” is just as you say, which is so unfortunate. I am with you 100% on the use of the term “brains disorders.” Thanks for sharing.

  9. 71 & Sunny says:

    I’m the same way. I cringe at the term “obsessive-compulsives.” I only very rarely even use the term OCDer’s, and frankly I don’t really like that either. I don’t know, it just seems dehumanizing or something. And I DO think language matters. But hey, people can call themselves whatever they want. I’ll just never call myself or anyone else that.

  10. 71 & Sunny says:

    Just sent ya an email. ; )

  11. lorreleon@bellsouth.net says:

    Thank you so much, Janet, for looking into alternative ways to refer to people with OCD and the great responses. Discussion is so insightful. I have also been asking people nationally for words to describe disability culture rather than the word “DISability”. Many great responses to include “issues”, “complex needs” and my favorite “Diverse Abilities”. Best, Lorre

  12. myocdvoice says:

    What an interesting debate!
    I love the idea of people first language and it shows how much power resides in the way we speak. I also worry though that if said around people who don’t really understand OCD “person with OCD” might sound like the quirk misuse of the word OCD whereas sufferer helps convey seriousness. Hmm… I will definitely keep thinking about this.

    • Thanks so much for sharing your thoughts, and I think you bring up a great point. “Person with OCD” definitely has a lighter tone than “OCD sufferer.” Maybe they are each appropriate at different times?

  13. Hilda says:

    I use “people with OCD” or “OCD sufferers”, but it doesn’t bother me to think of myself as an “obsessive-compulsive” person. When other people call you “OCD”, that’s another story, because we people with OCD are so much more than our disorder.

    • Thanks for sharing your thoughts, Hilda, and I understand what you are saying. There’s also a difference between calling someone an “obsessive-compulsive person” and an “OC.” The first one has the word person in it! Wishing you all the best and hope to hear from you again!

  14. I’m the editor of the Long Island OCD Support Network website at ocd.hereweb.com I have heard that there is a new way to express this, without implying ‘suffering’, ‘disabled’, ‘different’ or ‘consumer of mental health services’. I’m using “(normal) person with lived experience with OCD” throughout our website, on our free phone “OCDHelpline” at (631) 486-4818, and in my everyday conversations with everyone. Unlike “consumer” or “client” (or, worse yet, “patient”), it doesn’t imply you are getting therapy or taking medications or anything different from what I jokingly like to call “the chronically normal” people. It doesn’t invade your privacy or choice to get or refuse help of any kind.

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