Mental Illness Awareness Week: Stigmas, Stereotypes and Sharing

Posted October 6th, 2011 by

On Tuesday, we recognized Mental Illness Awareness Week (October 2-8) by sharing some of our mental health members’ vivid descriptions of what depression feels like. Today, we’ve taken a look at what else our members are sharing – or not sharing – about more than a dozen mental health conditions at PatientsLikeMe.

Share How You're Feeling Right Now with Instant Me

On the site, more than 80% of our active mental health members (meaning, those who have logged in during the last 60 days, n=1,589) are capturing the various factors affecting their mood and sharing those experiences with patients like them. 1,339 have posted an InstantMe update (shown above) to record their moment-to-moment status, and 843 have completed a weekly Mood Map survey.

But what about sharing in the real world – outside of PatientsLikeMe? In a poll we conducted earlier this year, we discovered that patients with a mental health condition are, along with HIV patients, the least likely to share their diagnosis with others. For instance, overall results suggest that when it comes to immediate family, 81% of respondents say “all of them” know about the diagnosis.  However, in HIV, this figure is only 50%, and in mental health conditions, it’s 56%.

February 2011 PatientsLikeMe Poll Results from 3,858 Patients with 10 Different Conditions

Interestingly, however, our poll also found that PatientsLikeMe members have shared their diagnosis with more people as a result of using the website. For mental health conditions (formerly called mood conditions at PatientsLikeMe), 28% of respondents said they had told more people about their condition as a result of PatientsLikeMe, as the graphic above illustrates. Here’s how one mental health member explains it:

“Although I have not created a large number of [forum] posts on PatientsLikeMe, just the few posts that I created gave me confidence in explaining my condition and how it has impacted my life.  PatientsLikeMe allowed me to explore others’ perceptions of their experiences. Knowing I ‘belonged’ here, and was understood here was valuable in my recovery.  So being comfortable here, at PatientsLikeMe, made me feel more comfortable discussing my diagnosis away from PatientsLikeMe.”

This, of course, speaks to the stigma surrounding mental illness, which is something Mental Illness Awareness Week aims to change. (The 2011 theme is “Changing Attitudes, Changing Lives.”) At PatientsLikeMe, we think change comes from getting to know real patients living with real mental health conditions. As one person commented on our Facebook page, “I always see people making fun of ‘crazy’ people, frivolous jokes including depression and bipolar, and movies that skew the severity, understanding and seriousness of these disorders.”

Can sharing your mental health experiences help erase the stigmas and stereotypes? The Academy Award-winning actress Glenn Close, whose sister has bipolar disorder, certainly believes so, as she writes in a great article entitled “The Stigma of Silence.” She argues that talking openly about mental illness with “more candor, more unashamed conversation” can “deconstruct and eliminate stigma.” We believe so too, but we’d love to hear your thoughts in the comments section.


4 Comments

  1. Interesting question, one that i battle with all the time. I have given up on having a relationship as I can find no one that accepts me for who I am. It would be different if I found someone that loved me before I became so challenging, but being like I am, I cannot hide it, and it would take a saint to put up with me. I have always said most the time I can’t handle me, how can anyone else. I have told my family and some friends about my illness (rapid cycling bipolar), but most don’t understand. Because I appear “normal” most of the time, people think I am just difficult or lazy. I too get tired of all the jokes people make, if someone gets mad once in awhile, people joke that they are bipolar. I certainly would not tell a perspective employer, who would hire me if they know. Now that I am finally receiving disability I am more inclined to share my diagnosis, but often I feel normal so I try to ignore it. Basically, most the time I am afraid to share, I have trouble enough making friends, why would I want to scare people away. BP has such scary connotations and I am hypomanic, not really noticable to most, and my depressions are short lived, so again not too noticeable. I wish to god the stigma would disappear but I am not sure sharing will help except maybe in a non personal forum.

  2. Thanks for chiming in, Sam. I’m sorry to hear about the stigmas and stereotypes you’ve faced. You may find some solidarity and support in our mental health forum room where other people with BPD are talking about just these issues: relationships, friendships, working, support, coping. We believe in openness and hope that patients sharing their real-life experiences will increase awareness and acceptance for all conditions.
    Cheers,
    Liz

  3. I am wholeheartedly in favor of openness and disclosure of mental health conditions. Sam, I want to say: I found someone who loved me for who I am, bipolar and all. I was well into the disorder when I met him, and he accepted it and fell in love with me, and we have been married for 26 years. Three kids, a stable life. I have been on disability for 13 years but have not worked for 22. My husband makes the money (and has the good health insurance!). So “saints” do exist! That feeling of I can’t handle me, how could someone else…..someone loving you will help you handle–and love–yourself. And, it is hard to make friends when you are keeping such a big secret (about your BP)–so look for friends among people who already “get” it. I found friendships through support groups that lasted for years. People who are surviving mental illnesses are some of the smartest, strongest, most caring people you could ever meet. You can join a group like NAMI and get involved in some of the work they do–I was a speaker for their IOOV program, which sends people with mental illnesses into the community to briefly tell people what it’s like and to educate, reduce stigma, reach people who may be experiencing the illness. You just tell your personal story and take a few questions. That is just one program they offer. NAMI has a lot of programs that allow you to use your illness to help others who are experiencing the same thing. In the process, you will gain confidence, understanding of the disorder, work experience and –most important–empathy from others. You are a strong person, you are more than your illness, you deserve love and friendship and a meaningful life. It’s always your decision to “tell” or not and how/when to do so. Best of luck to you.

  4. I wish that mental illness didn’t carry such tremendous stigma but it does, even with health care professionals (and others who should know better). Do yourself a favor and don’t tell anyone. When you are sick, isolate yourself as much as possible until you’re feeling better. I’m afraid well-meaning websites like this one give people a false sense of confidence. Don’t let your mental illness become your identity. Be who you are in spite of being ill. And do yourself a big favor: only tell people who absolutely need that knowledge. No one wants to hear this, but it’s TRUE.

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