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Christiane Wells: Living With the Stigma of Mental Illness

Posted: 04/23/11 10:54 AM ET

2011-04-15-picture39814.JPGBy Christiane Wells

If you have a mental illness, one thing you learn is how to deal with people who mock the disorder you've been diagnosed with. From strangers to television shows to coworkers, it is hard to escape those who make hurtful remarks about people with bipolar disorder. The misconceptions surrounding bipolar disorder are many, and until they are dispelled, stigma will continue to cause people to suffer alone -- hesitant or fearful to admit they have a mental illness lest their friends, family and coworkers discover they are "crazy."

My last job, as a caseworker in child protection, was a real lesson in learning not to betray my hurt feelings when people I liked and respected spoke ill of clients with bipolar disorder. They had no idea (yet) about my own struggle with bipolar disorder, and didn't realize they might as well have been talking about me. Eventually, depression forced me to inform my agency that I have bipolar disorder because I needed to take time off before I completely fell apart. Once my boss and the administrators knew, it was over. I was labeled "crazy," and that was that.

In that job, I worked with a parent who has Bipolar I Disorder (my diagnosis) and she really impressed me with how well she was managing despite the stress in her life. The other professionals working with me spoke derisively about this mom. She and I took the same medications and it was tough to hear.

Stigma plagues those of us with mental illness, and I can only hope that raising awareness and educating the public will make a change. For example, bipolar disorder is quite misunderstood. There are four categories of bipolar disorder, each varying in symptoms, but all serious and potentially debilitating in terms of social and occupational functioning. People with Bipolar I Disorder have had at least one manic episode, as opposed to people with Bipolar II Disorder who have hypomanic episodes. Studies have shown that people with Bipolar II Disorder have more periods of major depression than people with Bipolar I Disorder.

The other types of bipolar disorder, Bipolar Disorder Not Otherwise Specified and Cyclothymia, are also very serious. It's not a competition about who has the more severe illness, although sometimes it seems that way. One fallacy is that mania is always a great time, and I assure you it is not. Sometimes a manic episode manifests as extreme agitation, and the feeling is so uncomfortable it makes me want to jump out of my skin. It's during these times I've felt "crazy." Wanting to scream, punch walls, and run away are very unpleasant. "Fun" mania is the type where you feel like you're on top of the world, you're invincible, and anything is possible. But when the feeling goes away, it's emotionally crushing.

One thing that I'd like to see change is people saying, "I'm bipolar." Also, I cringe when I hear people referring to us as "bipolars." We are people with bipolar disorder. I have the illness, but it doesn't define me. This is something I struggled with until fairly recently. It sometimes takes years to be properly diagnosed, and once diagnosed, it can actually be a relief. Finally you understand why you've felt the way you have, and displayed behaviors that may have caused great damage to your life. But we are more than a diagnosis, we are real people, with feelings and hopes and dreams that are bigger than bipolar disorder.

There's no easy answer here. It isn't just bipolar disorder that is stigmatized, it is all mental illnesses. We can't "get over it," or "suck it up" or "snap out of it." While some disorders are temporary, many are not, and it may take a lifetime of medication and other measures to control the symptoms. I'm doing pretty well in my life right now, but it is because I work hard to be where I am. Therapy, medication, eating healthy foods, spending time outside, journaling, reaching out to people when I need help -- these are just some of the things that help me. And it isn't always enough. Like someone with a chronic physical illness such as diabetes, I have to make a conscious effort to be well.

I'm not speaking for all people with bipolar disorder; I'm just sharing my own experiences with this illness. I've been contacted many times by people who are desperate to get help, or who have had a friend or family member with bipolar disorder, or major depression, and they've chosen to reach out. We can learn from each other, help each other, and with increased awareness and education, I do believe that stigma will be lessened in our society. The thing I always want people to know is that there is hope. No matter how dark things seem, there are others who understand, and change is possible.

Christiane Wells, MSW, is the author of Magical Shrinking: Stumbling Through Bipolar Disorder and No Guarantees: A Young Woman's Struggle to Overcome Drug and Alcohol Addiction. She lives in Highlands Ranch, Colorado, with her husband and son. Read her blog on Red Room.

 

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09:31 PM on 06/06/2011
I just wish my mother would take my BP seriously. She says she gets it, but then it bothers her that I don't like to go into crowded places, especially bars.
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Genita Love
snarky and cranky
04:23 AM on 05/14/2011
I have Bipolar II and PTSD..but, that isn't all of who or what I am...But, one of the things I am is an advocate...I currently serve on a consumer advisory council that serves mental health consumers in the state of Kansas...a member of that body's board of directors.

Yes, it is difficult to live with stigma, the discrimnation, demarginalization and dehumanizing conduct of prejudiced, bigoted people. Like the author has proven in her article- it IS possible to rise above all that. It's even possible for mental health consumers to speak up and advocate for themselves and possibly even take on roles of leadership in the
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11:21 AM on 04/26/2011
As a friend of a bipolar, I've found myself wondering about how to help.

She told me about the bipolar diagnosis and then two months later had an episode where she immediately ended our relationship without explanation or cause. Conversation went from frequent daily to the silent treatment. From my perspective, it was a surreal experience. I've tried numerous times to reconnect over a period of time and have found myself seeking professional help to find some closure because her behavior was so uncharacteristic.

Its easy to assign that behavior to the individual as a permanent character flaw, but that's not right. And its also easy to walk away, but that doesn't seem right either. I'm stumped.
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Vajara
vajara
09:25 AM on 04/26/2011
Would be good if the mental health workers would no longer refer to their clients/patients as bipolar...they are not their diagnosis, but human beings have been given a label that sticks with them for life by the mental health industry and many of their therapists.
02:07 PM on 04/26/2011
Honestly, the whole label thing doesn't bother me. It's no different than someone saying "I am diabetic", or even "I am pregnant". It's pure semantics, I think.

The "industry" isn't sticking a label to someone just for the fun of it. They diagnose someone with a certain illness in order to give them adequate treatment. Many insurers won't cover certain medications or treatments without a certain diagnosis attached, for example. A diagnosis of bipolar disorder given by a psychiatrist can help a patient who is applying for disability benefits. Without that label, the government will look at you and say, "So, you're not blind and I don't see a wheelchair... Uh, nothing's wrong. Get back to work."

It's not so much the label that bothers me. It's how the illness limits what I can do. I don't care what others think, really. My friends and family accept me for who I am and those who don't are shown the door. The only one who has a hard time accepting it is me, and that's because I'm stubborn :)
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Vajara
vajara
02:32 PM on 04/26/2011
It is good that labels don't bother you, but they do add something to your identity that may be difficult to transcend or transform. Our Mind, I believe, is always working to help us heal, recover, change and improve our health and wellness. A *disorder* can be very harmful, discouraging and disillusioning for an Injured Warrior who believes he can improve and return to the Force. Over 60% of our Warriors diagnosed with Chronic PTSD have recovered, restored their health and returned to active duty. When they believe this is an "injury" not a "disorder" they become higly motivated and hopeful rather than fall into the trap of believing they will have these horrendous injuries and symptoms for life. Mental Health has a practice of believing that their syptoms can only be suppressed with meds and are generally given conventional therapy for treatment and restoration. Our Restoration & Resilience Center provides intensive, extensive and holistic health methods and practices, full time for 6 months and with followup for as long as required. Sure the Insurance Industry pays according to the Diagnosis, but they could do it with a Number that protects the confidentiality and privacy of clients and patients. Hey, they call themselves scientists, so surely they can come up with a code that provides hope and not despair.
08:48 PM on 04/25/2011
I'm at a point where I'm learning to accept my illness and how it limits my life. It's a disability. Worse yet, it's a disability that nobody can see and very few people take seriously. Some days, I'm not even disabled. Others, I can't get out of bed. The lack of consistency makes holding a job or going to school nearly impossible. In fact, thanks to my bipolar disorder, I have lost jobs in the past. My work history is so atrocious that nobody will hire me, even though places are actually hiring again now. I never get called back, and I can't even get an interview. They just see that I haven't had a "real" job since 2008 and toss my application in the garbage.

Oh, and then there are the people who think psychiatric illnesses aren't real, or they "don't believe in them". Uh, sorry, but you can't just "not believe" in an illness. I can say I "don't believe" diabetes is real, but that doesn't change the fact that it's real. The constant blathering on about how it's all just a big conspiracy from "big pharma" and that the meds don't actually help... Ugh. You want to see me when I'm off my meds? It's not pretty, trust me.

I am learning to accept that my life isn't going to be what I wanted it to be thanks to bipolar disorder. I'll always be held back, whether by the illness itself or by society's misunderstanding.
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abra1967
10:19 PM on 04/25/2011
I would love to hear my husband believe & say to me anything your wrote in your second paragraph. One day at a time is not just for AA.
Fanned.
02:17 PM on 04/26/2011
The way I see it... At this point, the MRI scans have shown that bipolar brains are different enough from "normal" brains that there's obviously a physical, biological difference. It's a highly heritable illness as well. There's no doubt about it: it's an illness of the brain and to deny that it exists is as silly as denying the existence of diabetes, cancer, AIDS, etc.

People are so quick to deny scientific evidence... it's scary.
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Montana 123
Mama to Three Little Monkeys
08:47 PM on 04/25/2011
Thank you for your post. My husband has BPII. It has been devastating. Not only for him but for me, our children and extended family. We didn't have a diagnosis till June 2009. We are still trying to dig our way out of the financial mess that accompanied his diagnosis.
07:41 PM on 04/25/2011
Mental illness is misdiagnosed in people over fifty percent of the time, so how do -You- know what is accurate and what is a professional guess?
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Montana 123
Mama to Three Little Monkeys
08:43 PM on 04/25/2011
Do you have a link to back up that statistic?
07:09 AM on 04/26/2011
When I worked for a top mental health rehabilitation facility I had developed a real trust with the -Clients- and they opened my eyes with the way they think and live in their world? Since I am a good observer their statements to me were backed up with my observations of their reality? Among thousands of documented observations and conversations over the years one of their comments repeatedly mentioned by -Clients- was that they were misdiagnosed over half the time? Upon questioning many many clients I came up with this figure of over fifty percent of mental health clients? Over the years of interaction on my own time with mental health professionals and bureaucrats and clients and caregivers and parents and homeless people and people with mental illness outside of the mental health industry etc. etc. etc.? My documented observations and interactions with a broad segment of the mental health industry allows me to make a blanket statement that in the vast amount of cases the mental health industry is one big -Ponzi Scheme- that only helps the mental health professionals???
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Joseph Burgo PhD
Clinical Psychologist, Blogger
05:05 PM on 04/25/2011
While I basically agree, one additional reason that many people show such disrespect is that the use of the label "bipolar disorder" is currently in vogue; because it is getting so much media attention, it can seem as if "everyone has it", which tends to trivialize the problem. An additional side-effect of the bipolar vogue is that as physicians become more sensitized to the possibility of the diagnosis, they use it more often. This can be a good thing when it raises awareness in psychiatrists and other mental health professionals, but it also leads to indiscriminate use of the label among primary-care physicians who have little psychiatric training and do not do adequate follow-up to monitor the medications they prescribe. Thus many people who believe they have "bipolar disorder" because their family doctor told them so don't actually meet the DSM-IV diagnostic criteria.

I also agree with your comments on common mis-perceptions about manic episodes; but because the diagnostic label is so widespread, many people perceive it as over-used and a kind of cop-out (regardless of whether or not this is true in a particular case).

As for "I'm bipolar", I see that as no worse than "I have bipolar disorder." Neither one addresses the emotional difficulties and conflicts at the heart of manic-depressive illness and instead they both reduce a highly complex problem to a diagnosis code or label.

http://www.afterpsychotherapy.com/bipolar-disorder-symptoms
03:02 PM on 04/24/2011
This article could not be more timely for me. I am mocked daily for OCD and bipolar disorder. I'm 42 and both illnesses completely control my life. Making matters worse, I lost everything I had nine years ago when my mother died and my sister threatened me into "trusting" her to help with our estate (she had been cut out of the family bank account for gambling). She would get my doctor to wipe me out, she would have the family dogs taken from me, etc., etc. No one--NO ONE--ANYWHERE--helped me. I am a lot older and wiser now. But I wake every day to the same torrents of misery I've had since age twelve. I don't show any of it. I've managed to recognize bipolar thought since about age 26, and recognizing it mixed with the almost total numbness I've felt for years, is all that really makes my condition bearable. But people could be a LOT more understanding of mental disorders/diseases. If I showed my illness physically, I would have been an "object of pity" nine years ago--certainly not that I wanted to be seen as such, but I might not be sitting right now with nothing, and a broken heart.
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William Anderson LMHC
Licensed Psychotherapist, Weight Control Expert
09:51 AM on 04/24/2011
Great article Christiane. And great work on your path. The difference between people who work to treat their disorder and those who stigmatize is consciousness and honesty. Those who work to treat their disorder are of a higher consciousness and integrity. Those who think they have no disorder are lacking in consciousness and honesty. They are ignorant and in denial. To be human is to suffer some disorder. One either admits it and gets better or denies it and remains disordered. Those who stigmatize are not getting better. You are. Congratulations on the enormous contribution you are making. See mine at www.TheAndersonMethod.com .
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brooklyncitizen
Quaerite primum regnum dei
10:55 PM on 04/23/2011
I think it had more dignity when it was labeled manic depressive.
It is undoubtedly a terrible illness.
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Joseph Burgo PhD
Clinical Psychologist, Blogger
05:06 PM on 04/25/2011
I completely agree. Manic-depressive illness had more dignity and more descriptive value as well.
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iblogleft
Certifiable
08:37 PM on 04/23/2011
It is a devastating disease. You have to keep hope that they will discover more effective treatments for more people.

Always keep that sliver of hope.
Always keep that sliver of hope.

Sometimes it is all that keeps me alive.
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DJ Jaffe
Founder, Mental Illness Policy Org.
04:30 PM on 04/23/2011
Thank you for your post. "Stigma"="a mark of disgrace or infamy". You can raise awareness all you want, in others, but until you yourself realize that bipolar is not "a mark of shame or infamy" it will exist for you.
http://www.opednews.com/articles/There-s-No-Stigma-to-Menta-by-DJ-Jaffe-110416-261.html
03:54 PM on 04/23/2011
I have to agree in many ways, but I am just a psychotic depressive. Living with the stigma is accepting that people will judge you by the diagnosis you have. Any lack of conformity seems to have people labeling and it hurts to be referred to as the crazy chick.

Most HR departments do not comply with HIPPA for people with emotional disorders although it has the same protections. Your medical problems are no ones business. Getting treatment or taking time off should be applauded rather than demonized. We do not demonize cancer patients for taking time off for treatment do we?

I define my illness, it does not define me.
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as promised
Educ yourself re David Barton & his followers
07:42 PM on 04/23/2011
Your medical problems are no ones business.
11:24 AM on 04/24/2011
It's easy to say this (your medical problems are no one's business) but in practice it is much more difficult to handle. People talk, and people people pry, and when you don't look physically ill, they will jump to all sorts of conclusions even if you keep your medical status to yourself. I've worked in jobs where I was in shear hell trying to keep my mental disorder secret from everyone around me. I was becoming sick from the stress of it, which made my horror of a manager come down on me even harder, until finally I cracked and had a breakdown. My doctor and I decided to tell my work at the time that I had the flu and needed a few days to recover in order to get some rest and try to go back to it. I'm so glad I'm not there anymore...
02:26 PM on 04/23/2011
Christiane, it is a wonderful thing that you didn't let this destroy your life. my daughter is still in denial, and won't accept help. she was going to see her dr., but decided the me & her dad are the cause of all the bad decisions she's made, & all the negative things in her life. i pray that she will soon realize she can't keep living in a world with no structure, and as she said, "nothing to look forward to" thank you for the insight you have given me, and the strength to not give up on the sweet & caring girl i know is still there , but lost for now.
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Beth Alexander
05:38 PM on 04/23/2011
I remember my sister going through such a phase when she was a teen. Everything wrong in her life was somehow someone else's fault. Now that she is older and coping much better, she shares that those reactions were simply from a place of anger, or "why me?" feelings she had toward the world. She knew something was wrong but was not ready to confront it. Be strong! You sound like a caring mother, show her that she is worthy and deserves to love and accept herself, and hopefully she'll come around. I hope my message doesn't come across as "know it all", as I don't know you, but I feel for anyone in your shoes because I know it is very hard. Peace and love to your family. -Beth