11 posts tagged “stigma”

Mental Illness Awareness Week: More understanding, less stigma

Posted October 5th, 2016 by

Did you know it’s Mental Illness Awareness Week? Or that tomorrow, October 6, is National Depression Screening Day? Each year, the National Alliance on Mental Illness (NAMI) works to overcome stigma and provide education and support for those living with mental illnesses.

Whether you’re living with mental illness, know someone who is, or just want to do your part to help change the way the world sees mental health, get involved by taking the #StigmaFree pledge.

But first, check out this roundup of stories, study results, and more from the past year — all inspired by members from PatientsLikeMe’s mental health community:

 

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Touched with fire: Eliminating the stigma of bipolar

Posted March 3rd, 2016 by

PatientsLikeMe member Paul is a filmmaker who’s harnessed his bipolar into creativity, most recently in the debut feature film, Touched with Fire, which he wrote, directed, edited and scored himself. In the last month, we’ve spoken with him about his diagnosis and what he does to cope. Now he’s opening up about fighting the stigma that so often accompanies this condition.

He stresses the importance of people being able to see through the eyes of a person living with bipolar because, “they would see the beauty of it and wouldn’t look at us that way anymore.”

Watch what else Paul has to say:


Having trouble watching the video? Click the button below:

Share your own experiences and connect with more than 83,000 members in the Mental Health forum on PatientsLikeMe.

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Meet Christel from the PatientsLikeMe Team of Advisors

Posted November 29th, 2015 by

We wanted to take a minute to introduce you to Christel, one of your 2015-2016 PatientsLikeMe Team of Advisors. Christel who was 12 years old when she was diagnosed with type 1 diabetes, shares openly that she spent a lot of her teens and twenties ignoring its existence.

But 32 years later, Christel has made peer support and advocacy her focus. She’s founded a psychosocial peer support conference for adults with diabetes (and caregivers, too) and co-founded an advocacy organization for easy and effective diabetes policy advocacy. Christel also writes a popular patient blog, ThePerfectD.com, and speaks publicly about her experiences.

In a recent interview (below) she talks about societal stigmas surrounding diabetes and how important it is to connect with others who share this condition.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

Society thinks that diabetes is a punchline; something that shouldn’t be taken seriously.

We need to stop making fun of diabetes. All those pictures of desserts with the hashtag #diabetes? People with diabetes aren’t laughing. In fact, it only perpetuates the ignorance.

Those who are diagnosed often don’t get the proper education and care they need, and don’t talk about it, as the stigma surrounding diabetes due to misinformation prevents us, as a society, to address how to support people with this disease.

Until that changes, the increase of diabetes diagnoses will continue. The latest statistics show that 1 in 3 U.S. adults could have type 2 diabetes by 2050 if we don’t change our attitude and educate the public on what diabetes is, what it isn’t, and what can be done. (And the number of type 1 diabetes diagnoses are also increasing, although we don’t know why.)

What needs to happen? Education, compassion, and a willingness to speak up when someone makes a joke about diabetes.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

29 million Americans have a diabetes diagnosis (that’s 11% of the population!) and 86 million more have a pre-diabetes diagnosis, yet there is a lack of true awareness about what the disease is and the gravity of a diabetes diagnosis.

Type 2 diabetes is a metabolic disease. Individuals diagnosed have issues with the insulin they produce; not enough insulin or a resistance to the insulin they do have. People with Type 2 can manage their diabetes a number of ways: diet, exercise, oral medications, and insulin – or a combination of any of these.

Type 1 diabetes (which I have) is an autoimmune disease, and we comprise about 5% of the diabetes community. My body attacked the insulin producing cells in my pancreas, so I must inject insulin to manage my glucose levels. Without insulin, bluntly stated, I’m dead within a few days (if not sooner).

Even with insulin, I walk a fine line every day attempting to keep my blood glucose levels in range. Too much insulin in my body and the consequences can be immediate: mild impaired cognitive function to seizures, coma, or death. But too little? The consequences can be just as devastating: long-term complications and/or the poisoning of my body through ketoacidosis.

I’ve oversimplified these two main types (there are other types of diabetes!), but here’s what shouldn’t be oversimplified: insulin is not a cure, you cannot “reverse” or “cure” diabetes (you can maintain), you don’t get diabetes from being fat, you don’t get diabetes from eating too much sugar, and if you ignore your diabetes, the complications are deadly.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

Grieve.

It’s perfectly acceptable to fall apart and mourn the life before your diagnosis – and your caregivers should do the same. You can ask: “Why me?” and shake your fist at the sky.

There will be plenty of time to be brave and courageous and inquisitive. Get the grief out of the way first. Don’t put it off or deny it as I did, years after my diagnosis, because grief is inevitable.

But don’t get stuck in your grief. Find others who can help and support you and guide you through your next steps in the journey.

How important has it been to you to find other people with your condition who understand what you’re going through?

Diabetes can be a lonely disease. For years after my diagnosis, I didn’t know another person with type 1 diabetes and wished that I could talk to someone about the daily challenges and the fears.

The Internet opened up my world and gave me confidantes, compatriots, and support from all over the world. Without the ability to get help online and share my thoughts and experiences, I truly believe that I would not be living well with diabetes today.

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Getting ready for psoriasis awareness

Posted July 31st, 2015 by

Image courtesy of the National Psoriasis Foundation

Tomorrow is the official start of Psoriasis Awareness Month. The National Psoriasis Foundation (NPF) wants people with psoriasis to know they are not alone: Over 7.5 million people in the U.S. have been diagnosed with the condition, and more than 4,800 people with psoriasis are sharing what it’s like on PatientsLikeMe.

What does psoriasis look like? It’s a skin condition caused by unknown factors, and most people have red, itchy, scaly patches, especially around their knees, elbows and scalp. Psoriasis IS NOT contagious, yet people living with this skin condition often experience stigma when others notice their symptoms.

The NPF has a calendar full of events to create awareness about treatments, and offer support for the psoriasis community. Visit their website to learn more about what’s going on in your city or town. You can join “Team NPF” to participate in a walk, run, or other fund-raising event near you.

During Psoriasis Awareness Month, check out PatientsLikeMe posts on psoriasis, including the results of our “Uncovering Psoriasis” surveys, patient interviews with MariaDavid and Erica, and learn what doctors Jerry Bagel and Steve Feldman have to say about psoriasis. And if you’re living with psoriasis, don’t forget to connect with the community at PatientsLikeMe.

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Compassion for All: Overcoming the Stigma of Mental Illness

Posted July 27th, 2015 by

From our partners and friends at the Schwartz Center for Compassionate Healthcare.

Our partners at Schwartz Center Compassionate Care recently published a paper about how people living with mental illness experience prejudice, and how their doctors can give them better care.

“Overcoming the Stigma of Mental Illness to Ensure Compassionate Care for Patients and Families.”

Read the full paper

-Lisa Halpern, director of recovery services at Vinfen

Over the years, we’ve heard from the PatientsLikeMe community that many living with mental illness experience stigma, so we thought you’d like to know what researchers have to say about how people with mental illness don’t always get the care they need:

“One of the ways people suffering from mental illness are discriminated against in healthcare settings is when patients’ symptoms are over-attributed to their mental illness. The result is that their other health problems can go undiagnosed and untreated.”

Our partnership:
Over the last 20 years, the Schwartz Center focused on providing compassionate care, while over the last 10 years, we’ve brought the patient voice and the patient story to the life sciences community. We’re excited about the alliance, which will help us better understand the patient’s perception of compassionate care. We can strengthen the relationship between patients and their healthcare providers, which leads to better health outcomes, lower costs and greater patient satisfaction.

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Myths vs. facts about multiple sclerosis

Posted March 18th, 2015 by

Stop! What do you know about multiple sclerosis (MS)?

That’s the question we’re asking during MS Awareness Month. We’ve heard from many community members that people don’t always get what it’s like to live with MS, and that there’s wrong information out there. So as part of ongoing awareness efforts, we created shareable photos that will hopefully dispel some of the myths surrounding the neurological condition.

There are 13 shareable infographics in total – click here to view the gallery.  Don’t forget to use the #MSawareness hashtag when you post on your Facebook or Twitter. Let’s kick things into high gear and start dispelling myths about MS this month so that everyone is armed with better information all year round.

What’s the community saying?

“The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness”
-MS forum thread

“I have only been offended two times in 20 years by strangers. Family, now that’s a different story – stigma runs rampant there when it comes to MS.”
-MS forum thread

“A society that attaches a stigma to our disease when people fear it or don’t believe it exists, then discriminates against us instead of trying to imagine what our lives are like.”
-MS forum thread

Already a member? Awesome! Click on any of the links above and join the conversation. Not a member? No problem. Sign up for free here and then add your thoughts. Every voice is welcome.

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“Post-MS, I’m one of the strongest people I know” – PatientsLikeMe MS member Jazz1982 opens up about her experiences with MS

Posted March 20th, 2014 by

PatientsLikeMe members are located all over the world, and this month, Swedish MS advocate Jazz1982 shared about what life is like on the other side of the Atlantic. She spoke in detail about the stigma surrounding MS, her exceptionally strong mindset and her experiences with Betaseron, Tysabri, Mabthera (Rituximab) and a few other pharmacological treatments.

 

You mentioned you hail from Sweden – a lot of the MS community has been talking about the new drug Lemtrada that was recently approved over in the E.U. What have you heard about it?

Well, I’ve been living in Sweden for the past 4 years, and I’ve only heard about Lemtrada through my neurologist when he mentioned the list of viable medications I could switch to, and he did not recommend it for my case. It was shown to cause an increased amount of infections due to a compromised immune system, and I already had an almost chronic UTI while on Tysabri, so we voted it out.

MS awareness is a big part of your life – have you connected with any fellow MS advocates in Sweden or the greater E.U. through PatientsLikeMe?

MS awareness is a very big part of my life, but also as a side note, I have to say that I learnt not to say I have MS. The stigma associated with MS far outweighs any benefits that come from awareness, from my personal experience. To be very honest, no one cares unless it happens to them, and people perceive being sick as a weakness, when in reality I was very fragile and easy to break before the MS. Post-MS, I’m one of the strongest people I know, and I take things very differently from how I was before. Priorities change, your body changes, you change and become flexible; this is to deal with everything MS might throw at you because it spills into your everyday life, and being flexible just becomes second nature to you. Things become far simpler than they were before because you have bigger problems than your annoying boss, your untamed hair or not having a boy/girlfriend. When you have MS or any other chronic disease, your national anthem bellows the sound of constant loss, and it hurts to hear your name in the song. You have a choice to let the so-called bull grind you to a pulp or see what you have and use it to make the best out of the situation. I always get the ohhhh you poor thing look once anyone finds out that I have MS, and quite frankly, I’m not interested in their pity. What I am interested in is leaving the world a better place than when I came in, and either you support me or work with me, otherwise, I don’t have the patience to deal with pre-conceived negative notions that people have around any sort of illness.

On the more positive note, I love it when people ask questions about being sick. The other day I had a family member ask “how is it that someone who can only walk with a walker be happy?” When you have lost everything (your marriage, your career, your friends, the life you once knew) and you learn how to walk again, it’s the most ecstatic feeling in the world to be able to take a step, completely unaided by another person. Everyone wants to be independent, and when it comes back, no matter what shape or form the package comes in, you love it and you love it intensely. Questions are more than welcome, and it makes me feel good to be able to shed some light on the situation.

It’s a personal choice, and I tried to share it but found it to be an overall negative experience where no one was learning from it, so I chose to mostly keep it to myself.

So, yes I have spoken to others that have MS, Parkinson’s, stroke, etc, in Sweden, though PLM is not as popular here than in the US.

Many members have shared that they had trouble finding a diagnosis. Was that your experience, too?

I have exhibited symptoms since I was 8 years old, which is highly unusual, but my MS went into full swing in my 20’s and I wasn’t diagnosed for 2 years while my condition rapidly deteriorated. A diagnosis was both a relief and a shock to my system. Everything comes in a 50-50 coin flip, one way it’s a disaster and another it’s a burden off your shoulders. It’s not something you could have evaded if you just ate and exercised right, you get to hold up the MS card and say “see, I knew I wasn’t insane! I knew I wasn’t imagining it, it actually has a name.” The human brain is the ultimate categorizing machine, you need to categorize it for yourself and so others know how to deal with you. Once the category has been chosen, then the mission begins of going through the stages of mourning the loss of the old you and embracing the new you. I found that to be the easiest part, the hardest is seeing who gets on board with you and who doesn’t. It’s kind of like fast forwarding through a tape of your life while everyone else is still in “normal” mode, it’s painful but you learn a lot. It’s an experience that no one welcomes at first, but you learn to see it as a long-term benefit! Similar to the saying the truth shall set you free, but it will piss you off first.

Can you share a little about your treatment experiences with MS? Have you ever changed treatments? And if so, why did you decide to?

I first started out with Betaferon (Betaseron to US readers), which was a painful 3 years, but I didn’t have much choice when it came to medication back then. As it turns out, I was allergic to interferons, and as you may know, medications are determined by a trial and error method, which can be catastrophic. My slow decline into what I see as losing my humanity began and didn’t stop until I met my current neurologist (whom I love to pieces), when he immediately took me off the Betaferon and switched me onto Tysabri. I was one of the lucky ones, it was nothing short of a miracle. I suddenly went from not being able to see, feel or think to leaps and bounds better (along with rehabilitation) when I earned my Master’s degree, and I was able to walk again and simply gained control of my body and my life in the process. It was tough, but to see your brain functions come online one by one is an honor in itself really, and well worth it. After 2 years on Tysabri, we did a blood test, and my JCV antibodies were too high for comfort, so I had to switch.

My neurologist follows protocol but he also listens to my reasoning, and we had a long discussion about my treatment choices. Protocol states that I try Gilenya after Tysabri, but after doing some research I found Mabthera or Rituximab. Now, Mabthera is also a chimeric monoclonal antibody that depletes B cells, while Tysabri depletes T cells and a significant link was found between the depletion of B cells in regard to T cells. In other words, you deplete B cells then you deplete T cells in the process while not compromising your immune system. Now Mabthera is used in Rheumatoid Arthitis and Non-Hodgkins Lymphoma, but it’s off label use was for MS. Gilenya uses a different method all together and to my mind, why try something when you don’t know its efficacy on your body, while you already know what Tysabri has done. So, after a long talk and seeing the numbers for all the medicines’ efficacy, we chose Mabthera. My neurologist was supportive of the decision, made and prescribed the treatment and explained it fully. He even gave me a hug at the end of it. 🙂

I can definitely say Mabthera was even better to me than the Tysabri ever was. I am currently on Mabthera and it may sound scary (most of the MSer reports I read were that of impending doom) but I asked my nurse and neurologist about it and they said that MSers barely noticed anything at all. I am currently on Mabthera  (just started it 3 months ago) and would say if Tysabri worked well for you, I highly recommend it if your doctor gives you the green light. It may sound daunting to try an off label drug but I didn’t have a single symptom on it.

As I’m sure you all know, switching medications was not easy and I had prepared for the worst but went in hoping for the best. Usually, if anything is to go wrong, it will during the first hour of the infusion. I went in prepared with my anti-histamine (some people experienced allergic reactions) and my Tylenol but the hospital staff gave me that plus a small dosage of cortisone (5mg) but never did I even dream that I wouldn’t experience even 1 symptom. I get an infusion every 6 months, and during the infusion the nurse checks your blood pressure every 30 minutes and increases the drop rate. The infusion lasts 5-6 hours (I am sometimes longer since my veins see a needle and hide like they saw the abominable snowman, and it takes an average of 3 times to get a vein, my record is currently at 6). Clinical trials and previous MSers have used it safely for up to 8 years, which to me is pretty impressive.

You share a lot about MS research in the PatientsLikeMe forum – how do you see sharing info like this, and your own health experiences, helping others like you?

Numbers are the sexiest thing. I know, people don’t associate numbers and sexy but hear me out. They help me determine which direction to shift to, help others, and they’re the universal bind that holds us all together. I get to make an important choice without the influence of others, unreasonable emotions or illogical judgments. Numbers don’t lie; knowledge is king and with this evidence I can increase my quality of life and succeed at being me, which in the end, is all that matters. If that isn’t sexy then I don’t know what is.


Finding Peace, Confidence and Lifelong Friends: An Interview with Psoriasis Patient Erica

Posted March 27th, 2013 by

Of all the psoriasis patients we’ve interviewed, Erica was hit by this highly stigmatized autoimmune condition the earliest – she developed visible symptoms at the tender age of 9.  Now 21, she shares her decade-plus journey from being the girl that people avoided in school to an increasingly confident young woman who has finally started meeting others like her, people who are also living with the daily challenges of psoriasis.  What difference has that made for her?  And how has she started to take control of her treatment course as of late?  Find out that and much more in this inspiring interview.

Erica Psoriasis Patient CROPPED

1. Tell us how you were treated by classmates and school nurses growing up.  

The first few years were the hardest, trying to understand the disease and how it affected me. It was hard to explain to others, since they didn’t really want to listen. Most of my classmates avoided me because they were afraid they would catch it, no matter how many times I would explain it they never believed me. I was sent to the nurse a lot because I’d scratch my head or my arms till they bled. The nurses never wanted to deal with it so they sent me home. Now that I’m older and can explain it better, I don’t have as many problems. If someone stares at my skin, I simply tell them it’s psoriasis and it’s not contagious. But the hardest thing I had to go through was people avoiding physical contact with me.

2. How important is it to find the right dermatologist? You’ve said yours is like a second mother.

I’ve known Dr. Clifton since I was 13 years old, and I’m 21 now. It’s very important to have that great relationship with your doctor. They need to know every single little detail of your life when you have a serious disease such as psoriasis, as so many things can cause it to get worse or better and can react with the medications. You need to know that they will listen to you and take the time you need. You also need to trust them with your life. The last time I saw Dr. Clifton after three years, I had changed, however, and I didn’t agree with the treatment course she wanted to do. I respect her advice but I don’t agree with her [at this point], so therefore I’ve decided I want to find a different dermatologist.

3. What’s helped you develop the confidence and love of life you have now?

I still have days where I feel depressed but I’m lucky enough to be surrounded by amazing supportive people in my life. God is the main reason I overcame the depression. I pray a lot! I also read my Bible, listen to Christian music (Skillet is my favorite band!), talk to someone and change my way of thinking. When I feel sad or upset I’ll look up Skillet on the laptop and just play it as loud as I can and just breathe. I always feel better after that. I go to an amazing church that has some awesome people in it. I know I can call or text any of them any time and they will be there for me. If I’m focusing on the bad, I try to look at the bright side of things and that seems to help as well. But praying is by far the thing that makes me feel best and at peace.

4. What’s it been like to connect with other psoriasis patients at PatientsLikeMe

Growing up with psoriasis, and having no one else around with it, was extremely hard. I had no one to connect with. But since being on the site, I’ve made some great connections and have made some lifelong friends. The strange thing is how much we have in common and how many of the same things we’ve been through. What’s awesome is being able to tell someone what’s going on with my skin and they really understand because they’ve been through the same thing. In the past nine months, I’ve also met a lot of people in person with psoriasis and I’m always telling them about this site!


Psoriasis and Bullying

Posted February 22nd, 2013 by

Teasing.Physical violence.Staring.Social isolation.Name-calling.

A photo shared by one of our members, Lissa, who has guttate psoriasis and plaque psoriasis.  Click the image to read our interview with this inspiring psoriasis blogger!

Many of our members with psoriasis, a chronic autoimmune condition that can produce red, scaly patches and other skin symptoms, report experiencing various forms of bullying while growing up.  One relays the story of a teacher who repeatedly sent her to the nurse’s office, assuming that she had a contagious condition.  Another recalls receiving notes in her locker informing her that she was not welcome in gym class or study group.  And yet another shares that her classmates spread sexual rumors that her psoriasis was really rug burn and voted her most likely to get pregnant in high school.

These are just a few heart-wrenching examples of the stigma, ignorance and misinformation that often surround psoriasis, which is not contagious. For these members, the bullying they encountered growing up often had a major psychological impact that included hurt feelings, self-consciousness, depression, anger, loneliness and dating difficulties.  Some report that it ultimately made them stronger, however.  Have you been mistreated as a result of your psoriasis?  Share your stories with others who can truly relate in PatientsLikeMe’s growing psoriasis community, which now has more than 5,000 members.

Also, find answers and take control of your psoriasis care plan by learning from PatientsLikeMe members’ treatment evaluations and seasonal survey answers as well as our ongoing dermatologist interview series, which delves into investigational psoriasis treatments currently in clinical trials and other psoriasis treatment trends.  Stay tuned to the blog for another dermatologist interview very soon!


Spotlighted Blogger: Psoriasis Patient Alisha B. of “Being Me in My Own Skin”

Posted April 16th, 2012 by

Psoriasis Blogger Alisha B. of "Being Me in My Own Skin"

Welcome to the latest installment of our “Spotlighted Blogger” series.  So far, we’ve interviewed patient bloggers living with gastroparesistype I diabetesbipolar I disorderParkinson’s disease and ALS, and today we introduce Alisha B., who felt alone in her struggles with psoriasis until “coming out” on her blog, Being Me in My Own Skin.

Alisha is currently participating in the WEGO Health Activists Challenge, which encourages health bloggers to write 30 posts in 30 days during the month of April.  To make it easy, WEGO sends out a daily theme to tackle.  Alisha has risen to the occasion and produced inspired posts such as “Dear 16-Year-Old Me” and “I Do This for One Reason.”  How has blogging changed her?  Find out that and more in our interview below.

1.  Tell us about growing up with psoriasis – the physical and emotional impact.

Growing up with psoriasis was not an easy battle.  I was not only dealing with the regular stuff like puberty and body image, but throwing psoriasis in the mix made it a lot tougher. I’ll be honest, confidence was not something I had very much of as a child. Although, I was not a depressed child. I was considered the class clown or goofy one among my friends, but deep down inside I was hurting.

I just wanted to be “normal” and in my eyes that was a life without psoriasis. I may have been this confident chick to somebody from the outside looking in, but I stopped myself from a lot due to my condition. Now that I look back on my teenage years everything I did was virtually shaped around my psoriasis. The decisions I made, the activities I participated in, the events I went to, even the clothes I wore.

2.  What’s it been like “going public” about your psoriasis on your blog?

I started my blog in June 2011 after going to the National Psoriasis Foundation (NPF) conference. I remember sitting in a workshop they had about using social media to advocate for your condition. I had seen other psoriasis bloggers, and I remember saying to myself, “I can do that.” On the way home from the conference, ideas were flowing to my mind on different posts I could do, and it was a really great feeling.

"When I started to really and truly love myself, accepting my psoriasis became a lot easier." - Alisha B.

Going public with my condition through my blog has been liberating! I wish I would have done this a long time ago. A lot of times I hid, uncertain of how people would accept my condition. But today, the more people I discuss my disease with, the more I realize that the things I was telling myself mentally were only because of my own insecurities. People are a lot more understanding than I could have ever imagined.

My outreach has also helped me to connect with other people dealing with psoriasis, and I no longer feel alone like I did just one year ago.

3.  What are the most helpful things you’ve learned from other psoriasis patients?

I met a young lady named Kasi at the NPF conference. Her psoriasis condition was equivalent to mine. Her skin was very visibly broken out. She was so confident with the way she walked and the clothes she wore, it really inspired me to stop hiding. Kasi as well as others at the conference really made me feel good and encouraged me. I’ve had this type of encouragement from family and friends, but nothing is like the inspiration that you receive from people who are actually living with this disease. Other psoriasis “conquerors” encourage me to not be ashamed and to embrace my condition.

4.  Tell us about the WEGO Health Activists Challenge and why you’re participating.

The WEGO Health Activists Challenge was suggested to me by the NPF. Doing the challenge is exciting because there are new topics to discuss everyday and I get to connect with other activists. I decided to participate in the challenge to bring more attention to psoriasis. A lot of people are silent about it out of fear of ridicule, and I was once one of these people. The more people who know about this disease, the faster the stigma will end.


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.