Self-Stigma: When Mental Illness Stigma Comes From Within
I recently participated in a wonderful panel called "Self-Stigma Solutions" alongside three people who live not only with mental illness but also with the mental health stigma that comes along for the ride - both external stigma and internal self-stigma. Each person shared the messages they heard, once diagnosed:
- "your life is over"
- "you'll never amount to anything now"
- "you'll never have friends"
- "you may as well just give up"
Society's Stigmatizing Messages Create Self-Stigma Within
Where did these messages come from? Sometimes family members, friends, even on a rare and sad occasion from professionals trying to present a "reality check" - and often, from themselves.
For how are we educated as to what happens after a mental illness diagnosis? How often are we exposed to success stories, to hope? And, with not enough evidence to refute the messages we receive from the media, and from some movies and books - we can sometimes reinforce those negative messages by what we tell ourselves.
And then we become victims not only of stigma, but of self-stigma.
Well - the people with me on that panel did not give up. They may have been down, but came back up. They not only refused to believe the stigma, they learned to change the messages they were giving themselves. Yes, even with mental illness and all the stigma that comes with it, success is possible. One of my fellow panelists is now a lawyer, one a therapist, one a counselor - and all share their stories to help others living with mental illness, and their families.
Self-Stigma Interrupts Lives
My son Ben, who lives with schizophrenia but "doesn't like to talk about it", chooses very carefully whom he will tell that he has been in the hospital a number of times, and now takes medication daily to stay stable. Some friends are aware of this, but only after Ben feels comfortable enough to feel, as he tells me, "they won't go: oooooh, you have a mental illness . . . you're a freak . . . I can't be friends with a weirdo."
Ben's employer now knows about his schizophrenia because we had to reveal it when Ben relapsed last year - but, thankfully, it made no difference to this employer. We are very lucky, we know.
Ben had spent ten years feeling unemployable - which wasn't easy. After he stabilized, the road beyond self-stigma to self-belief took a long time. How do you answer when people say, "and what do you do?" when it's all you can do to stay out of the hospital?
I am often asked whether Ben feels stigmatized. Is that one reason he doesn't want to take meds? Does he fear friends will drop him, potential girlfriends will not bother, if they know about his diagnosis?
Sadly, yes. That is still true. And while we work in increase understanding, empathy and respect for those living with mental illness, one place we can begin is in looking for the stigma within ourselves.
How to Erase Self-Stigma Starting from Within
- Consider the Source of Negative Messages (they may be ignorant of the facts) - as a family member, I know people don't understand Ben's illness, and often the fact that it is nobody's fault.
- Hang On to the Positives (past success, others who believe in you) - Ben tells me he has learned to respond to fears by reminding himself "that was then and this is now"; he also reminds himself of the things he has done (volunteer work, going back to school, staying clean and sober, having his own money) instead of looking at useless "shoulds" as to where he could have been without the detour his life took. When we focus on strengths, there is less room for "can't."
- Replacement Messages (e.g. eliminate the word "just" or "only" when you describe what you do: So you are "just" a volunteer at a warmline? No! You are a volunteer at a warmline. That's counseling, that is helping others, even if no paycheck is involved yet, or ever. This has value, real value. Use "My life has a new set of potentials" instead of "My life is over." "I'm having a problem" instead of "I can't."
Yes, this takes patience. Yes, it takes reframing your thoughts until they look like problems to be solved instead of obstacles that prevent. Yes, it takes work, and time. But as my fellow panelists now tell us with their stories, it helps to see these things:
and then...to be patient, and recognize when expectations need to be revised, then celebrated.
Kaye, R. (2012, September 30). Self-Stigma: When Mental Illness Stigma Comes From Within, HealthyPlace. Retrieved on 2020, September 28 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2012/09/when-mental-illness-stigma-comes-from-within
Author: Randye Kaye
Thank you Randyne for your article, I belong to a group for Bipolar etc.
(One is not allowed to advertize) :) and I daily see people stigmatizing themselves as I also used to do prior proper treatment
I am Bipolar 1 , on Medication, stable and have good coping skills and how did I get there? By telling myself my disease does not define me, I define it and I will try my utmost best to live a positive productive life despite everything.
[…] I know a lovely woman, completely accepting and understanding, who tries to coax me out of my shell. We have gone to lunch a couple of times; spent hours in Starbucks. But it’s hard. I know I like spending time with her, I feel better after, she is funny, smart and pretty. She makes me laugh. I make her laugh, but my natural inclination is to hide. And maybe that is “The Writer” in me but it is more likely that I still feel ashamed (Self-Stigma: When Mental Illness Stigma Comes From Within). […]
I just want to pass on a huge hug to all of you for sharing your experiences openly. They have helped me more you can imagine. My son is currently in jail, again and finally has been looked at by a case worker because of unrealist thoughts. He is 32 and looking back on his life and conversations we've had i now see that some things weren't quite right. Because he was abusing drugs I always chalked it up to that not understanding that more was going on. I found out from an old girlfriend of his that he was diagnosed almost 10years ago with schizophrenia but never told anyone else and didn't take his meds. Sadly in those years he has left a wake of broken relationships because of his behaviour. But as a mother how can you give up on your children. And so your stories are helping me wrap my mind around his "mind".. Trying to understand how best to help him and at the same time deal with my feelings of guilt.. His case worker was surprised that his family didn't see and get him help earlier... Good old guilt.. Gotta let that comment go or I'll drive myself crazy.
Thank you all again and I look forward to your input.
The jury is still out on whether Asperger's is a mental illness or not-- but depression and general anxiety disorder certainly are, and those are exactly what I've developed from years and years and years of living with Asperger's and seeing myself as a broken thing that no one could really love.
Almost half a decade ago now (has it really been so long?!?), I tried to kill myself, just to get away from being broken. Why?? After years of struggling through on my own, I asked for help from a therapist, only to be told that all the terrible things I believed about myself were correct, and that all the successes I'd been propping myself up with all these years must have come only through the effort of others, who must be graciously biting their lips and letting me take credit.
Consider the source-- later, almost a year after my suicide attempt, my therapist and several others in that clinic lost their licenses on charges of conspiracy to commit disability fraud.
DON'T BELIEVE IN "YOU CAN'T." DON'T LISTEN!! The world is full of lies about mental illness. Look at what you've done, and try again tomorrow.
When I was hospitalized in 1994, I had a psychiatrist tell me that it would be best for all concerned if I hurried up and killed myself.
It's been 18 years and I still hear his words on at least a weekly basis. If ever I do take the step to end my life, his words will be the last thing I hear before the world goes black for the final time.
Wow Colette. I wish for you some more positive messages to replace that awful one. That psychiatrist . Yikes!
I've referred to myself as " broken" since being diagnosed nearly 9 years ago. My family withdrew from me during the worst of my illness, long before I was diagnosed. The general consensus was that I must be a drug addict. My mother couldn't understand why, during all of my hospital stays, I wasn't put on the drug and alcohol rehab ward. I wasn't doing drugs. I never tested positive for drugs. Addiction was not my problem. Episodes of mania on the other hand was my problem. Who knew?
It was just last year that I said to my Doctor, "I'm not broken". The years he has spent trying to discourage that label I put on myself was finally cast aside. I thought he'd do a cartwheel, he was so pleased.
Not "broken", but I cant quite let go of the guilt. My family places a lot of guilt on my shoulders for the destructive things I have done while manic. They bring up this story or that when we get together. Stories begin with, "before Lisa lost her mind". I have two grown children who still won't speak to me.
I'm not broken! I have had to rearrange my life because of my illness. Things are quite different now, but the madness is under control. I never meant to hurt anyone. A lot of the things I did I don't even remember. I am reminded tho, of just how horrid I was. " I did do all those things...I'm sorry...it's not who I am, it is a manifestation of my Bipolar disorder" has been my mantra.. Now I keep my mouth shut.
They need to get over it!
I need to let go of it!
I'm working on it.....even if they're not.
Thank you so much for writing ...
Not only are you "not broken" you are beautiful and brave. As my son says: my past is my past and I am working hard on my present. Kudos!
Fantastic piece. Couldn't agree more.