Monday, May 14, 2012

Don't let anyone know: The stigma of OCD and other mental illnesses

By Georgia O'Keefe. http://en.wikipedia.org/wiki/File:Blue-green.jpg

Last week, I wrote about May being Mental Health Month and touched on the stigma that still surrounds mental health illnesses.
Readers commenting on that post also discussed the continuing stigma that can keep some people from seeking help for their illnesses.
I decided that I wanted to further explore that idea of stigma and especially how it related to obsessive-compulsive disorder.

Stigma about mental illness

What is stigma? According to The American Heritage Dictionary, stigma is “(a) mark or token of infamy, disgrace, or reproach.” So, in a way, to some people, there’s a disgrace associated with having a mental illness.
I certainly felt disgraced the first time I went to the office of my first psychiatrist. I was 26 years old and had been in therapy with a psychologist for a year or so. She wanted me to see a medical doctor for help with my depression and with the OCD that I had recently revealed to her.
I lived in a small college town then, and I remember being relieved that the psychiatrist’s office was in another town about 10 miles away. I hoped that would lessen the chance of someone I knew seeing me go into the office.
Because if others saw me go into a psychiatrist’s office, they might think I was crazy. They would certainly wonder what was wrong with me, what was it that I couldn’t handle like “normal” people could.
I remember even being embarrassed with the front counter staff in the office. They knew what their boss did. Did they think ill of me? Did they look down on me?
These were my thoughts that first time.
The Mayo Clinic has some helpful information on its website about the stigma surrounding mental health.
An article called “Mental health: Overcoming the stigma of mental illness,” by Mayo Clinic staff, states that other people’s “judgments almost always stem from a lack of understanding rather than information based on facts.”
Negative effects of stigma, according to the article, include a lack of understanding on the part of families, friends and colleagues; discrimination; a hard time finding housing; physical violence and harassment; trouble with health insurance not adequately covering care; and the belief that people with mental illnesses cannot be successful at certain things or get better.

Stigma about OCD

And then there’s the stigma of having OCD. It’s still easier for me to tell people I have depression than to tell them I have OCD. The symptoms of OCD can look strange.
It wasn’t easy for me to tell my first psychiatrist how I cleaned my bathroom compulsively, that I checked the stove for literally hours, that I couldn’t walk 10 feet without looking behind me to look for dangerous objects.
I was afraid of what she would think of me. I was afraid she would think I was a weird, crazy person who had brought all this on myself.
It’s still not easy to reveal my symptoms.
According to the International OCD Foundation’s “What You Need to Know About Obsessive Compulsive Disorder,” found on its website, some people with OCD hide their symptoms because of their fears of embarrassment or stigma. That’s one reason that it takes an average of 14 to 17 years from the time of symptom-onset for sufferers of OCD to receive proper treatment.

Fighting stigma

The advice that the Mayo Clinic provides for how to combat the stigma of mental illness apply well to the stigma about OCD, too.
That advice includes getting help for your illness, learning about your illness, getting support from people you trust, joining a support group, not equating yourself with your mental illness, getting help from school for your children who have mental illnesses, and speaking out about the stigma.
Two of those caught my attention in particular. One is the notion of equating yourself with your mental illness. The article reminds us that we are not our illness and suggests taking measures such as saying, “I have clinical depression,” instead of calling yourself depressed.
Ways to speak out against the stigma of mental illness include public speaking opportunities, writing letters to the editor and writing on the Internet.

Have you ever personally encountered the stigma of mental illnesses? Did the stigma cause you to delay seeking treatment?

20 comments:

  1. Hopefully some of the stigma will lessen over time as people educate themselves

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    1. I have hope that it will, Keith. When people are willing to educate themselves, good things can happen.

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  2. I remember when I was a little girl I used to visit my great grandmother (in another town) and we would always walk over to her neighbors house to say hello. The neighbors daughter was in her 30's, sometimes she would come down and say hi, other times she would stay upstairs - her mom said she was having "a spell." It scared me to death because I didn't know what a spell was, and when I asked my g-grandmother said the daughter had "nervous breakdowns." I have often wondered about that, who knows what that woman had or if she was ever given any help. You rarely hear that term anymore ( nervous breakdown) right?
    I think we have come a long way and the only way to get further is through education. Too many see mental illness as a weakness, something controllable if you toughen up. My own father thought I should pull myself up by my boot straps, so to speak, and wondered aloud what in the world I had to be depressed about when I had a great husband and beautiful, healthy children. I think I walked around for a long time feeling it was something I should be capable of doing (getting over depression/ OCD) on my own.
    There have been a few occasions when a friend has talked to me about either their own depression or a family members and then I do share some of my experience. It is like their eyes light up because I think it's a relief to find someone who can relate. I love if I am able to help in that way.
    I hate going to my psychiatrist for med checks every 6 months, because I am always afraid I will run into someone I know there since it is such a small town. I wouldn't have to explain why I was there anymore than if I ran into someone at my regular doctor's office, but I must still feel the stigma or I wouldn't go in and make sure I have my sunglasses with me in case I see someone I know..like that is going to fool them anyway.

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    1. Krystal, I remember hearing that term, too--"nervous breakdown"--and it scared me, too, because I got the impression that it was something bad and no one really explained what it was.

      I wonder if some people see something like depression as a weakness because they see it as a reaction to what's going on outside--if a person has a lovely home, a lovely family, what does he/she have to be depressed about, as your father thought. They don't understand that it is what is going on inside the brain that is the problem.

      I'm sure that you have helped people by being open about your own battles.

      I don't often see people I know at the psychiatrist's office, but sometimes I do, and there's usually at least a little mutual embarrassment--at least, that's what I feel. But you're right--if we were in a family doctor's office, we wouldn't be embarrassed. I still feel the stigma too.

      Thank you for your thought-provoking comment!

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  3. Excellent post! yes, stigma is out there and it's powerful. In fact, I bought into society's stigma for most of my life and had a stigma against myself (if that makes sense).

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    1. Yes, Elizabeth, that makes sense. I even read where people can turn the stigma against themselves, and buy into the myths about mental illness. I know I did.

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  4. The stigma is unfair, but I know what you mean. I still haven't been able to bring myself to blog about the ppd I experienced after having the twins. I think partly because if I decide to blog it, I want to be totally open about it, but there is a part of me that doesn't want my family to know how bad it was.

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    1. I can totally understand that, Lisa. I think we have many reasons for holding on to a stigma about mental illness--and one of those reasons is concern over the effects on others when they learn about it. It's not shame as much as wanting to protect loved ones, I think. I'm sorry you went through that.

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  5. I think your blog is going to go a long way toward educating people, and perhaps getting people to seek help sooner. I have taken the stance that it's important for me to disclose that I have GAD. Often people will try to talk me out of it, to "reassure" me that I don't have a problem. Outwardly I appear calm, and my life is filled with adventure, so people are confused when I share that I have GAD. But I think it's important to do so, so show the face of GAD...so hopefully, others who suffer will know that there's hope.

    We are people with a brain illness, just as some people have diabetes or lupus or low thyroid or many other medical conditions. We must find ways to cast off our shame and to insist that our doctors and society at large do the same. Our problems are not character defects that we need to hide, but a genuine illness -- one that just doesn't show on the outside.

    I am absolutely delighted at the wonderful work you are doing. Many blessings!

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    1. Nadine, Thank you so much! Your kind words mean a lot to me! I think what you said about mental illnesses not showing on the outside is an important point. Some people don't seem to want to believe anything is wrong if they cannot see it.

      By sharing with others about GAD, you're showing them that even though you have an anxiety disorder, you live a full and happy life and navigate your way through life just fine. That is a valuable lesson!

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  6. Its such a helpful post Tina!! Thank you.
    I suffered and still do suffer from all the "labels" people give me. I need to hide my medicine. I need to hide my feelings. When I was admitted to psychiatrist hospital, my family told people that I traveled.

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    1. Nikky, That is so much hiding you must do--I hope someday you won't have to hide your feelings, especially. You are so much more than your labels. Thank you for commenting! :-)

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  7. It's still very much with us. I used to be that way. Now I can't get my brother, who has even been prescribed anti-depressants, got them filled, took them for a while, and then was still too upset about it to actually stay on them. He would feel so much better if he continued treatment and got counseling, but he can't get over the stigma.

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    1. That must be hard to see someone you care about not getting going through with what would help. To this day, I still feel a bit embarrassed when I have to discuss my prescript with a pharmacist for some reason.

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  8. I remember once, many years ago, I picked up my prescription at the pharmacy. There was a label on the outside of the package describing that the meds were used for OCD. The sales clerk looked at the package and said, "Oh, hey, I've heard about this illness." I think he wanted me to say something, but I was absolutely MORTIFIED. I felt like a circus freak and that he was curious to look at the exhibit (meaning: me). I paid my bill and ran out of there.

    Another time, I bumped into someone I knew in the waiting room of my therapist's office. I wanted to die. Of course, today, I would feel very differently if that happened again.

    Sometimes, I think the worst stigma I have suffered has been self-induced. Most other people have been great with me when I've spoken of my illness.

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    1. Sunny, I have made myself suffer from stigma, too. I have felt embarrassed, ashamed, and afraid for others to figure out what was wrong with me. I've gotten a lot better with that, but I still feel funny when I see someone I know in the therapist's office.

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  9. I have really enjoyed reading through some of your articles. I too, and a fellow blogger with OCD. I will look forward to reading further.

    http://thespringcommitment.blogspot.ca/

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  10. I agree that some of the worst stigma I've experienced is from myself. I'm better at admitting to depression even though sometimes for me the OCD is the lesser illness. Depression can be kind of almost seen as normal, as long as I don't go into any detail about too severe symptoms. But OCD is so easily misunderstood. I don't want people to think that I have to have my books all lined up (I don't; I can be very messy). Along with that, I don't want them to think of it as a petty thing of me wanting things just so. Most of the things that made me most anxious (harm issues)are things I wouldn't want to tell people because I think either they wouldn't understand why such a stupid thought gives me so much pain or they would think I might actually do these things I am so afraid of.

    I am speaking up more on Facebook. Slowly still, and again regarding depression, but I've gotten some neat responces. When I am willing to admit to my struggle with mental illness, other people are more willing to share with me.

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    1. Abigail, You voice exactly how I feel about revealing OCD to others. You hit the nail on the head when you say you don't want people to think it's "a petty thing." And I, also, don't like to reveal harm issues.

      I'm glad you've gotten a good response on Facebook. You are really helping everyone with depression when you talk about it, I believe.

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