OCD and Other Illnesses: More Misconceptions and Stigma

brainI came across this great article recently, entitled  A Phrase To Renounce for 2014: ‘The Mentally Ill.’ The first part of the piece discusses the phrase “the mentally ill” and the stigma that comes along with it.

Dr. Paul Summergrad, psychiatrist-in-chief at Tufts Medical Center and chair of psychiatry at Tufts University School of Medicine, has a problem with the definite article “the.” He says:

“Imagine if I said that [using the word ‘the’] about any other group. It suggests that people who suffer with these conditions are somehow other than us, and can be put in a discrete and often stigmatized category. It creates a sense of otherness that is not the reality, statistically, of these illnesses.”

The author of the article, Carey Goldberg, gets the point, and realizes what an enormous effect one three letter word can have. She writes:

“I try a thought experiment, the headline “Equal coverage for the women.” Weird. “New era for the gays.” Offensive. “Crime and the blacks.”

It really is amazing the difference a word can make, isn’t it?

But what really piqued my interest is the second half of the article, where Dr. Summergrad discusses what a mental disorder really is. Basically, we are talking about issues with any type of mental functioning: thought, speech, emotion, behavior. As Dr. Summergrad says, this includes, “everything from Autism Spectrum Disorders to Attention Deficit Hyperactivity Disorder, through Obsessive-Compulsive Disorder, anxiety disorders, post-partum depression, recurrent depressive illness, dementing illnesses which have profound effects not only on memory but on behavior. Parkinson’s disease has high rates of very severe anxiety and depression.”

Personally, I have always felt there should be little to no distinction between mental and physical illness. Isn’t the brain as much a “physical” organ as our other organs? If we are ill we are ill, and our sicknesses rarely affect just one area of our bodies.

Dr. Gene Beresin, executive director of Massachusetts General Hospital’s Clay Center for Young Healthy Minds, also contributed to the article, emphasizing the blur between “mental illness” and “medical illness,” as well as the stigma still associated with disorders of the mind. He says:

For example, high blood pressure is a combination of genetics (biology), stress, obesity, cigarette smoking and numerous other factors. So why don’t we get upset when we hear ‘he has hypertension?’ The same argument should be made for so-called ‘mental illnesses.’ Post-traumatic stress disorder, for example, may be a result of a genetic vulnerability to anxiety, being trapped in a war zone, or being a survivor of a hurricane.

Virtually all illnesses have biological, environmental and psychological components. We could say the same for migraines, ulcers, asthma or diabetes. But it does not make one feel uneasy if we say, “He has asthma.’ On the other hand, ‘He has depression or obsessive-compulsive disorder feels so very different. Is that because it is labeled ‘mental?’ Certainly. ‘Mental’ is an arbitrary negative label that segregates something psychic, personal or ‘in the head’ from the body and the environment. It also is very scary.

And why is it so scary?

“This is because of the myth that it is not treatable,” Dr. Beresin says. “And that is certainly false. We have as good results as treating hypertension overall (considering medications, diet, exercise and stress reduction measures.) And the biggest horror is ‘losing one’s mind.’ This, I think, is a fate worse than anything short of death. Once we separate mind, body and environment and believe the myth of losing one’s mind, the myth of ‘mental illness has its perpetual fuel.’

I think this is a powerful article that brings up a lot of great points. The bottom line is the stigma surrounding brain disorders is alive and well, partly because of all the misconceptions that remain. Sigh. We still have so much work to do!

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18 Responses to OCD and Other Illnesses: More Misconceptions and Stigma

  1. Thank you for bringing this article to our attention. I hadn’t really thought about that little word “the” and how much difference it really does make.

    I agree that mental illness is looked at so differently from physical illnesses. It’s even a self-stigma. I have no trouble saying, I have high blood pressure, or, I have asthma. But I think twice (and more!) before saying, I have depression, or, I have OCD. It’s even harder for me to say, I have a mental illness. I KNOW there is no shame in having a mental illness, but it’s still difficult to buck the stigma.

    • I agree, Tina. You never know what type of reaction you’ll get when you admit that your or a loved one suffers from OCD, or any brain disorder (I’m getting away from saying mental illness as I’m starting to really dislike that term :)). It’s hard, but I try to remind myself that every time I don’t speak up, I am helping to perpetuate the stigma that exists. We all do the best we can!

  2. Abigail says:

    Thanks for the article review. I just started my Intro to Special Education class, and at the very beginning, we were given instruction in “Person First Language.” We are not to talk about the ADHD kids or the wheelchair-bound students, not blind students or disabled. It would apply to mental illness, too. We are not to talk about the mentally ill. No, we are to talk about kids who have ADHD, students who are in a wheelchair, students with disabilities, people who have a mental illness. Always, the person is to be mentioned before the disability, with the goal that we will see the person before the disability. It sounds like this article notices that, with the word “the.”

    And recognizing mental illnesses as just illnesses? I keep wishing for that day. I’ve read about how some illnesses that are considered “physical” have as much to do with life choices as “mental” illnesses. I think the hypertension was was among them. I guess I have to start by continuing to understand it for myself, that my mental illness is just that, nothing more nor less.

    • Sounds like you are getting great training, Abigail! Also, you bring up a great point; that understanding “mental illness” and stigma starts with ourselves………and then we can pass our knowledge on to others :)!

  3. 71 & Sunny says:

    Interesting article. I think that mental illness freaks people out because they always associate it with an unkempt person living in the streets and acting “crazy.” It scares people because they don’t understand it, and, maybe, just maybe, they fear it could happen to them. It IS sometimes frightening to live with mental illness. There have been several times when the OCD was so bad, I felt completely out of control of my mind or anything else. The great thing, and it was mentioned in the article, is that so many of these illnesses are now treatable. A diagnosis of mental illness is no longer a ticket straight to an institution nor does it mean a person is doomed to a lonely, non-functioning lifestyle. And THAT is the good news that needs to be spread!

    • Oh, you are so right, Sunny, and your description of the stereotypical “crazy person” is spot on. So many illnesses are scary. The fact that those related to the brain are often quite treatable really needs to be stressed. As you say, that’s what people need to realize!

    • bethwindler says:

      I agree, I think that mental illness is scarier than diabetes, for instance, because people fear unexpected or unusual behavior. We want to be able to predict how others will react in any given situation, and sometimes people with mental illness are not predictable in their behaviors. Whether or not that’s true depends on the person and the severity of their illness and whether they’re getting treatment, etc. So I understand that impulse, but it’s unfortunate.

      • Thanks for commenting, Beth. I agree that the expectation of unpredictability raises fear in people, whether or not it’s actually true. The media doesn’t help here. People need to realize that the vast majority of “faces of mental illness” are actually our mothers, fathers, brothers, sisters, and ourselves………regular people who happen to have an illness.

  4. Patty says:

    Thanks Janet! I just found your blog while looking up ERP and OCD. I have had OCD all my life (just turned 49 yesterday) and I have finally admitted that it is not just “my quirkiness”, but a serious illness…a mental illness. Labeling it as a chronic mental illness and fully accepting that I have OCD was scary and emotional. The societal stigma is a tough one to get over initially. Good news though, I am now working through an ERP program with my therapist (IOCDF referred) and although it is hard work, we are hopeful for my recovery. I thank you for bringing attention to OCD and the fact that there is treatment and a chance for quality life while managing this disease. After a little more work on my side, I hope to become more involved in spreading the word about OCD and treatment, especially catching it early in children. Thanks again!

    • Hi Patty, Thanks so much for commenting and I’m so glad you have found a good ERP therapist, and are on the road to recovery. As you surely know, we need all the advocates we can get so I look forward to hearing more from you! Wishing you all the best for 2014, and Happy Birthday! 🙂

  5. Patty says:

    Thanks so much Janet! I will absolutely check back in with updates on my recovery. I am also in Massachusetts, the Boston area, so I hope to get involved more with the IOCDF and do what I can to help others understand that there is help and hope for people with OCD. All the best to you, Dan and the rest of your family!

    • 71º & Sunny says:

      Hey Patty! Here’s to your recovery! I’m so glad you found a good doc.

      I’m in the Southern NH area myself, and I’m always excited to find some online friends nearby. : )

      • Patty says:

        Thanks so much Sunny! ☀️
        It was hard, but great to finally admit that I really needed help in order to have the quality life that I know I can live… The life that all of us with OCD deserve and can attain (albeit with some pretty heavy lifting in the beginning). It is very new for me to connect with others with OCD (I am super social in many settings, very good at hiding my OCD), but I am really happy that I’ve made to leap and joined the club! I feel better having a more personal knowledge of others fighting the OCD fight. Thanks for your kind words and support! Best wishes, Patty

  6. nrkellner says:

    I have two observations–

    1. I absolutely agree that word choice and semantics make a huge difference in perception. I had never before noticed how important (in this case in a negative way) the word “the” could be in how those with mental illnesses are perceived and compartmentalized. If we could move away from using the expression “mentally ill” as a catch-all and at least use a specific diagnosis, it would be more akin to a physical disease. We don’t refer to people with cancer as “the physically ill”.

    2. Another reason that people react so negatively to the phrase “mentally ill” is not just because they fear it is uncurable, but because so often they accuse that it is “in only in your head”. No one claims that cancer or diabetes is “in your head”, but disorders that affect emotion and behavior are often believed to be something you can control if you just put your mind to it. I don’t know why this misconception has persisted, but indeed it has.

    Thank you for a thoughtful piece beneficial to those both within and outside the OCD community.

    • And thank you for your thoughtful comment! You are right, we certainly don’t walk around categorizing people as “the physically ill.” Your second observation brings up a good point too, I believe. I do think it is much harder for people who have not experienced brain disorders to understand that certain thoughts/actions/behaviors cannot be controlled, whereas we would never expect anyone to just “control” their cancer.So many of our thoughts/actions/behaviors CAN be controlled so I think many believe ALL can be, which of course is not the case if you are suffering from certain illnesses. Lots to think about!

  7. Long Island OCD humanized its website, ocd dot hereweb dot com , last year by changing the language used to describe US. WE, the PEOPLE with OCD have graduated from one phrase to another over the years. History reveals we started out being called ‘demons’ or ‘madmen’, then ‘mental patients’, (implying we can only live in ‘mental hospitals’), which gave way 30 years ago to the word ‘consumers’ (but that word implies we ALL use mental health services), to the present concept of ‘Persons with Lived Experience with OCD’. Yes, finally, ‘PERSONS’ first; and no automatic implication of special care. LI OCD’s website has since replaced all the instances of the word ‘consumers’ with the more humanized ‘people with lived experience with OCD.

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