An Awareness Brainstorm
As I’m pretty sure everyone who participates in this forum is already very well aware, May is Mental Health Awareness Month in the US. I did a little googling to find out what that means to different people and organizations. [Apologies for that link. It’s really the most efficient way to share what I found.] Following my brief search, which included a severe sense of disappointment in the less-than-thorough Wikipedia entry, I had some questions about awareness, advocacy, priorities, and PR. This post is a brainstorming session, aimed at generating ideas.
Given that Mental Health Awareness Month lasts for exactly one month, given that we have eleven other months to plan for it, given the notoriously short American attention span, given the many issues that could be addressed, given a basic assumption of who may be listening to the messages put out there, given the many different media outlets for discussion, and given the many wildly inappropriate misconceptions about mental illness…
What message would you prioritize? What venue(s) would you use? What do you want people to know? Which audience(s) do you think you could effectively reach? These questions include several implications, including whether we’re talking generally about mental health or more specifically about mental illness and what we might mean by “awareness” and its relationship to “understanding,” “tolerance,” “acceptance,” “prejudice,” and “stigma.” These questions ask you to consider whether a grassroots approach, an institution-based campaign, or some combination of the two, is more effective. At their core, these questions ask about the nature of advocacy, about what one person could do, about what one small group (that’s us) might accomplish…in one month.
There are twenty-six more days in this month. That’s enough time to get people talking.
ADDENDUM: I wrote this then started doing a little more thinking. While we do a lot of discussing in terms of relating to one another’s experiences, we also sometimes talk about misconceptions, stigma, and advocacy. So, I’ve reached out to my network, done a little research and numbers crunching, and decided that — in a proactive stance on DF’s first Mental Health Awareness Month — Define Functioning is going into the book-making game. The first DF book will be finished (hopefully) by the end of this very month based (almost) entirely on the discussion on this post. The tentative/working title of the book is [insert number here] things we’d like you to know about mental illness. It will be a collection of short entries (1-3 sentences each). Anyone who contributes to the collection will be acknowledged by their screen name unless I’m told otherwise. If you’d rather your acknowledgement be addressed to another name or if you’d like to contribute via email, shoot me something at definefunctioning [at] gmail [dot] com. So, very seriously this time: What do you want people to know?
define Functioning 
Just because I’m crying or sad doesn’t mean I’m depressed.
Just because I’m excited about something for a few days doesn’t mean I’m having a manic episode.
Just because I was sad but am now laughing doesn’t mean I’m symptomatic. I have normal levels of emotions, too.
Just because I have a MI doesn’t mean I can’t be a great parent or shouldn’t have children.
Taking medication doesn’t make it go away; it makes it manageable.
Here’s some from me in no particular order. I think this book is a GREAT IDEA!
1. If you see a girl alone, crying and listening to music on headphones, and you think she needs help, be kind enough to ask if you can help. I was that girl, listening to music to drown out the voices. I was psychotic for years, and displayed symptoms in public without receiving sympathy, yet people like to condemn those who experience psychosis as if we are all freaks of nature all the time. We are human beings. Just like you. At times, we need a helping hand. Don’t stare at us; offer to help. Hand us the phone number of a local crisis line or mental health treatment center. Buy us lunch. Talk to us for five minutes. Don’t just stare and walk away.
2. You could get my illness. Just count your lucky stars that you haven’t gotten it. Consider that maybe the reason you don’t want to know anything about mental illness relates to the fact that you don’t want to know you could get it yourself. Consider that this is why you place labels and condemnation on those of us who do live with these illnesses.
3. I was a kid full of dreams and promise once, too. I happen to have gotten Schizoaffective Disorder. I still have my dreams, and sometimes it’s really hard to live with the fact that I can’t reach them all because my brain won’t let me do so.
4. Don’t underestimate those of us who live with mental illnesses. While there are many adjustments we must make to our plans and goals, we still have plans and goals. While some of us are not able to function on our own, others of us are able to go to college and hold jobs and have families, on our own. In other words, we can live full lives.
5. Many of us are responsible enough and desire to live enough to seek treatment, repeatedly, until we find treatment that works for us. Don’t assume we aren’t.
6. Don’t assume that every person who is ever psychotic is a potential killer because they just won’t take their medication. Most of us are not harmful to anybody, ever, and are statistically proven to be far more likely to be victims of crimes than to commit crimes.
7. That homeless woman talking to herself could be you. She just had the luck to be born with different brain chemistry from yours.
8. Suicide is the second leading cause of death amongst college students, and the third amongst high school students. How often do you hear parents discuss depression, mental illness, and suicide, with their children who might fall victim to it?
9. We are everywhere. We are in your workplace. We take classes with you at your school. We live next door to you. We babysit your kids. We go to your doctor. We do your accounting. We answer the phone at the place that you just called. We are your doctor. We are your teacher. We are your student. We are your sister. We are your cousin. We are your mother. We are your daughter. We could be you. We are not the Different or the Other. We are you. And we hear voices, think delusional thoughts, experience visual hallucinations, have manic phases and suicidal depression. But we persevere. We exist. We are everywhere. And we will continue to live amongst you. Deal with it.
10. I don’t tell the people I work with that I happen to have Schizoaffective Disorder, and they assume that I’m lazy or that I’m living off of someone or some government program, because I only work part time. They assume I have no aspirations to work full time. They assume I live in poverty on purpose. They are wrong.
11. Don’t make jokes about someone being a lunatic. This business with Charlie Sheen isn’t funny. It’s a tragedy. Don’t make jokes about something being “crazy”. Don’t talk about how someone should go take their meds. To some of us, this stuff is not funny because it belittles our reality, and you have no right to belittle my reality. You have a lot of audacity to think you do. It is a fact that people take meds, people have mental illnesses, and people will continue to have them. Why do you find that amusing? Does it make you feel more confident to belittle people who were born with brain disorders?
12. Don’t assume I can’t handle stress or I’m going to end up psychotic or suicidal because of it. Don’t assume I’m so fragile I’ll break under pressure, and I shouldn’t take on responsibilities. I want to live my life.
13. Don’t assume because someone doesn’t “look crazy” that they don’t have a serious mental illness they happen to manage with medication, therapy, and a lot of work. I don’t have a tattoo to let the world know about my illness. I don’t tell everyone about it. But it definitely has changed the landscape of my entire life, and it affects my interactions with people every day.
14. Volunteer for the National Alliance on Mental Illness. Volunteer for Mental Health America. Volunteer for Bring Change to Mind. Share the Minds on the Edge website link (mindsontheedge.org) with everyone you know. Work to spread awareness and combat stigma, and you will save lives while you enrich your own.
15. If someone discloses to you that they have a mental illness, understand how much courage it took them to do that and respect them for their bravery. If you want to understand their illness, then ask them about it. Don’t make assumptions.
16. I might not look sick, but you don’t look stupid either. If you assume I don’t have an illness because you can’t SEE it, then you are an ignorant fool.
17. Stop being ashamed you’re related to me. Get over it. I am not a danger to you or anyone else. I have a brain disease. It is a disease I effectively manage, and I lead a happy life. You have no reason to be ashamed that I disclosed my Schizoaffective Disorder, ofr that I did a lot of crazy things in the past. I am not something that should shame you.
18. In advocacy organizations, work to include people who live with the mental illnesses themselves, rather than focusing primarily on the family members.
19. I take a lot of medications. This does not mean I’m a drug addict. Don’t tell me I take too many medications. The reasons I take each of these drugs are because they keep me alive. I know a lot about them, and research them. I discuss them with my doctor. You are not my medical authority, and I do not need your condemnation for taking a lot of meds, when they are what allow me to live my life.
20. If you have a mental illness, know that you are not alone.
21. My accomplishments are not bizarre, amazing feats for “someone with that illness”. They are merely a tiny smidge of what I could have accomplished without this illness.
22. If you want to know what living with a mental illness is really like, simply ask one of us.
I’d like other people with mental illness to know that they are not alone – that there are other people out there struggling in the same way that they do.
I’d like other people with mental illness to know that getting treatment is a very good thing. I’ve met so many people who are unwilling to see a therapist or a psychiatrist because of the stigma, and whose lives could be incalculably bettered by taking that first step.
I’d like other people with mental illness to know that going to the hospital does not mean admitting defeat. It’s not the end of the road – in fact, it can be a new beginning.
And I’d like people WITHOUT mental illness to know that we’re trying our best. You know?
Thanks so much for the contributions so far! From what I’ve gathered here and via email, I’ve categorized things into a few different sections (if this list helps people think of more to say):
-About Who We Are
-About How We Seem (“You can’t tell by looking at me”)
-About Misunderstanding & Stigma
-About Things People Say
-About Hiding
-About Expectations (“Please stop expecting us to be incapable.”)
-About Mental Health Care & Mental Illness (e.g. meds, side effects, costs, etc)
-From Our Families (Do your supportive family members and/or spouses have something to say?)
-What You (the non-MI) Can Do
-To Others With Mental Illness
Please! Keep the ideas coming!! Thanks!
To others with mental illness
Keep trying. The answers may not come right away, but with diligence, they will come.
Management of the illness is key.
Therapy in addition to meds is really important for many people’s processing and management skills.
Don’t be afraid to do your own research and question your doctor.
There is no known cause of mental illness yet, but people are working on it.
Go ahead, fire your doctor.
Rest when you are tired.
You are number one despite what the rest of the population thinks.
In general: Being MI with kids allows me to better assist my children with emotional instability
(or maybe I gave you that one already)
Being in relationship with an individual with a mental illness requires compassion and patience. When the one you care about is struggling, it is vital you remain conscience that the struggle is their illness and not them. Whether your loved one is manic, depressed, angry, buzzing, seemingly out of control, always ask yourself the question: “Is this really them or their illness?” I have found the answer is the illness. Acknowledging that fact helps keep me from responding in a way that does not suit our best interests.
1. Being depressed does not include someone that’s upset about little things in life; there is a huge difference between clinical depression, and being upset because you had a bad day. This belittles those of us that have real, clinical depression.
2. People with mental illness are not lazy, and it is not possible to “snap out of it.” We suffer from a serious condition that requires hard work, treatment, and love and support from family and friends. Please help us in our journey.
Jess, I especially like the one about snapping out of it. That is so fucking common. So bad I even told myself that at times.
I just came back to see if there were any additional posts on this thread. I think the book idea is great, even if it doesn’t happen right away. Having it done so fast could be pretty hard to do. I think it is a great idea for a longer-term project, and I’d be happy to help.
Jen, she’s been working on it since it began. She’s got the layout and things put in there already. Have no fear. With ∃ doing it, it will be done! Fast!
It’s true that the book is pretty much laid out…I am now debating giving it another month to solicit more responses…but it’s looking pretty good. Thanks Jen…I’ll let you know if there’s any help I might need! You guys are awesome.
Since the book is underway, but you still need submissions, here are a few more from me:
-A fact is that suicide occurs twice as often as homicide in this country (the U.S.).
-A fact is that over 30,000 people kill themselves each year
-Suicide can easily be prevented, if there is more awareness, education, and understanding of mental illness, and if readily available, affordable treatment is provided.
-A fact is that the Los Angeles County Jail is the largest mental health facility in the nation, because more people are locked up in jail there than are in hospitals anywhere in the country for their illnesses. Many people are locked up for petty crimes related to living on the streets, and their illnesses worsen in jails when they receive no treatment and no medication. Then they are let out again, to go live on the streets again, and it is a revolving door for many.
-A huge number of the homeless people you see have mental illnesses, many of which are undiagnosed and completely untreated. You should have compassion for these people, not disdain for them. They are suffering from brain diseases, and their strange behaviors are a result of their disease. They do not choose to live on the streets, in the heat and the cold and suffer through untreated physical ailments, and hunger and police harassment. They are there because they are sick. And the only way they will ever get better is if this country provides funding for mental health care at community mental health centers and crisis units, at a MUCH higher rate than it currently does, along with services for homeless people such as shelters and job trainings.
-If you met me in one of my university classes, or at my workplace, or a community meeting for a group I’m involved with, you would not be able to tell that I was anything other than a competent, regular woman who smiles, laughs, and holds intelligent conversations. But you would be missing something. I am also a person with Schizoaffective Disorder who was floridly psychotic for six years without treatment or diagnosis, and who lived in three different shelters, as well as living in motels and a car at various points, because I could not keep a roof over my head as I was having severe delusion thoughts and did not know what reality was at all, was hearing voices, and was experiencing visual hallucinations. Psychosis can severely damage a person and it’s impact is deep and long-lasting.
-I also want you to know that recovery is possible. I got treatment, and I complied with it once I came to understand and accept that I had Schizoaffective Disorder, and I was experiencing psychosis, not reality. I have been on medication every day for six years, and today, I have lived in the same apartment for five years, am working part time, and am earning a Bachelor’s Degree at a major university. I was once hopeless; I had no hope. Today I have hope, and I have happiness, and I know how to cope. I got to this place through treatment. My case manager at my community mental health center, along with my psychiatrists there, and my therapist of four years, helped me survive and served as a lifeline for me, without which, I would not have survived. They, along with medication, and the lengthy hospital stay of six months that I had when I was diagnosed, are why I am alive today. Without this help, I would have been dead by suicide by now, as I almost was several times before I got help.
-Help needs to be available, and for many people it is not. People need help getting disability benefits, getting Medicaid benefits, getting on the waiting lists for the community mental health centers, and getting serious long-term care, because with a serious, long-term illness, managing it alone without treatment is a recipe for disaster.
-Don’t assume that people with mental illnesses don’t want to TAKE their meds, as many of them have no money to see a doctor and pay for their meds! And this is a societal problem, because we do not have a system of healthcare or mental health parity to pay for this needed healthcare which is a basic human right.
-There is a very easy thing you can do to help an individual with a mental illness. Listen to them. Let them tell you their story. Be a witness for them. Honor their truth. Acknowledge that they have experienced legitimate pain and suffering, and acknowledge that they are resourceful people who have managed to survive a very difficult road in life. Give them credit for their resiliency, and their strengths. Empower them, by believing in them. Do not ignore them. Do not pretend like their illness isn’t real simply because you do not understand it. Do not assume anything about their illness that you do not know from experience either having a mental illness yourself or learning about it through talking with people who do have one. Throw out all your assumptions, and sit down, and open yourself up to hear their truth. This is a life-altering thing that you can do for another human being which can have a profound impact on their life. And all you have to do, is listen, and say, “I hear you. You have been through something very difficult. And I believe you. I am sorry you have lived through this nightmare. I will be by your side if you need me.” A very simple way to change someone’s life.
-As people who live with mental illnesses, we need to tell our truths. Audre Lorde said, “Your silence will not protect you”, and she was right. Margaret Mead said, “Never doubt that a small group of thoughtful, committed citizens can change the world”, and she was right. If we all, collectively, begin to speak out about our experiences with mental illness we will bash that stigma that enshrouds it, and eventually we will be heard, and we will not have to suffer in silence any longer. We must speak out. Go to NAMI meetings, and offer to do public speaking in your area. There are many programs through which you can do this. Tell your story to professors, and classmates, and friends, and doctors, and people on buses, if you feel comfortable doing so. Or if you don’t feel comfortable doing that, write a blog and tell the blogosphere, as many of us have. In *some way*, please, I beg you, speak out.
Jen…These are great! If you have a chance, can you email me citations for some of the more specific figures?
The book is coming along so fantastically, honestly, that I want to make it a more substantial publication in hopes of it garnering the sort of attention it really deserves…so we’re aiming for publication for Mental Health Awareness Month 2012. So, in the meantime, keep ’em coming! And any additional promotion of the project you can do would be wonderful. I (and the rest of us, of course) really appreciate it!
I would love to help in any way that I can. I think this is a wonderful, important project.
*For people with mental illness–nothing stays the same. The incredibly intense, real, feelings you have now may not be the same ones you have 6 months from now. Feelings change. Situations change. Don’t make decisions for the future based on a feeling you have today.
*That also holds true for friends and family. Just because your loved one is having difficulty with x task doesn’t mean that will be true in one year.
*It also doesn’t mean it’s not very real and true right now.
*Your reassurance that I am ‘doing so well considering what I am fighting’ only makes me feel worse. I think of how amazing I could be doing if I was not fighting this battle.
*Just because I appear well on the outside, does not mean I feel “normal.” You many never know all of the things I need to do to regulate myself.
*I may never know what “normal” is like.
I just found your blog thanks to Jen Daisybee. I will be checking back in. I’d love to write more for you, if you are interested. (I have an unpublished blog-post about what the waking up from my suicide attempt was like, my decision to be a parent….)
Welcome! Thanks so much for your interest in this project and, as with all we do here at DF, your contributions to our conversations are most certainly welcome and appreciated. If you have a post you’d like to put up here on the forum for discussion, email me at definefunctioning [at] gmail [dot] com. As is noted elsewhere, this is a discussion and not a first-person blog, so posts from others are always appreciated.