I posted on Facebook today this: “Stigma is shame. Shame causes silence. Silence hurts everyone.” I was struck by a comment from one of my friends who said, “Stigma is the root of all suffering whose ripples expand and touch countless others…” Wow.
Her comment really struck a cord with me. I know from my experience how much stigma impacted my willingness to get help and stay with a treatment plan. Stigma caused me to internalize a tremendous amount of guilt because I had this mental illness “label.”
I don’t believe in labels, but I do believe in diagnosis. Without the correct diagnosis I was put on the wrong medications and it made my underlying condition worse. It is important to know what is going on and if it takes a “label” to help someone I am okay with that. But the fact that we even think of mental health conditions as labels means we have a problem.
I read a great deal about mental illness. I don’t read as much about mental health because I have a good understanding of what it takes to be mentally healthy. But as I researched information for an upcoming talk I am giving I found there is such a difference between what mental health advocates use to describe a mental illness. Here are some of them: mental health issue, mental health concern, brain disorder, mental health condition, and finally mental illness. All of us advocates are trying to make it okay to talk about mental illness. We are all trying to fight against the stigma. Some do it in a different language because of the great stigma attached to the words mental illness.
Here is the question I ask myself – what words make the most impact? I find myself using them all interchangeably. But I have to say there is a big difference between a mental health issue and a severe mental illness. An issue is something we can get over a severe mental illness is something that requires a life long battle. I believe if we are going to educate we have to be real and raw. Let’s get real about what we are dealing with and then let’s work to help people know it is okay to get help.
Experience is our greatest teacher. I have been on this journey with mental illness for more than 30 years. Trust me when I tell you the stigma of mental illness is dangerous and we must do everything in our power to eliminate it. Lives are at stake.
Since I have been publicly sharing my bipolar disorder diagnosis I have had some very interesting responses from other people. Most of the time people are very supportive, however, when they start to know a bit more about the struggle sometimes the questioning looks begin to happen. Here are my top four reasons Why It’s Hard to Share a Mental Illness Diagnosis.
#1 – People wonder if you are “crazy”
The general public has so little information on mental illness they don’t have a true idea on what the struggle really is about. Granted there might be some “crazy” times in the world of a person who lives with severe mental illness. But I have also personally experienced many times where I am really rather quite normal. If I am really “crazy” you will know it.
#2 – They think you are always sick
Had a bad day? Stressed out over life changes? Not in a good mood? The moment I am not my usual friendly self, sometimes I get very strange looks from people who mean very well, but don’t realize I am not always sick. There are days when I am simply having a bad day. Everyone has those days. I just don’t get the leeway like everyone else.
#3 – People don’t believe you can recover
When I say I struggle and I battle and I fight bipolar disorder, this really means I manage it. I work extremely hard at being “normal.” Not everyone can get their illness to the point where they feel as if they have recovered. I am not one of those people. I have several occasions where I have been either extremely manic or so depressed I could not get out of bed, but I always get better and return to a fairly high level of activity.
#4 – Oh the stigma
There are countless misunderstandings about mental illness that is created as a result of stigma. Stigma is shame. Shame causes silence. Silence hurts us all. This is my number one reason why I am an advocate. There more I talk about living with bipolar disorder, hopefully the more people will see that I am more like everyone else than I am different. I just happen to struggle with an illness that effects my brain. Does that make me a crazy, wacko, nuts or psyhco? I don’t think so. The more people come into contact with someone who is open about their mental illness the faster we can eliminate stigma.
My message to those who live with a mental illness is: Keep talking about it or start talking about it. Don’t be afraid. Because all of these obstacles I mentioned can be overcome. That’s how change occurs.
I am an athlete. I might not be in Olympic caliber condition, but I will always be an athlete. I am not the greatest fan in the world, but I did watch the superbowl. I really could have cared less who won or lost, but I became fascinated with the way Tom Brady handled being behind by so many points.
Stressful. Frustrating. Emotional. Yet he never quit. You can dislike Tom Brady and the Patriots, but you cannot discount the fact that this guy never gave up.
In my world of recovery and mental health advocacy I cannot think of a better comparison for how I feel about my recovery journey. I made it all the way back. I looked back today and thought about how many years and I do mean years, where I struggled relentlessly. It doesn’t mean that those years never had a good time or two, it just means they were long, hard, and draining.
As I sat in my new NAMI of Greater Wheeling office today I really just wanted to pinch myself. I started on this mental health advocacy journey three years ago and since then I have worked my way to becoming an Executive Director of a non-profit organization. One that focuses on advocacy for people with mental illness and their family members who support them. I have found my passion and my cause.
If you knew where I was four years ago, you might not believe I could make a comeback. If you want to find out what happened and how I did it…watch for the release of “Bipolar Disorder, My Biggest Competitor.” It will be released on August 22!
No matter what people say about me the one thing they can never discount is the fact that I never give up.
I have been putting the final touches on a book I am writing, “Bipolar Disorder My Biggest Competitor.” It has made me look deeply into myself as a character in a story. It is the strangest thing reading about this character and knowing it is me. But this experience has had a profound impact on how I see myself–sometimes victim, sometimes hero, and yes sometimes villain. But always strong.
If you live with a mental illness you know exactly what I am talking about. The times when you lie in bed feeling miserable and wish the depression would stop haunting you. And then you do it–you make yourself get up and get out among the living. In that moment you beat it. You won.
How about the times when you thought you might never get well again, but kept battling and recovered? Even in those darkest moments you found the beacon of hope glaring through the fog.
Then there are those times when you get “the look” from other people who know you live with a mental illness. It strikes the chord of paranoia and you wonder, “What is she thinking about me?” But you coach yourself through it and tell yourself, “It is okay. I really don’t know what she was thinking.” You overcome the negative thoughts. You beat “the look.”
What about those days when the trusted family member makes a joke about your mental health? You feel horrible but can’t get any compassion from the people closest to you. But you hang in there and keep fighting. You hope tomorrow will be better.
Believing mental illness makes you strong is opposite of what people have told us about it. Remember every battle you have had to fight, every bit of shame and guilt you have faced head on, and every medication you have to take just to feel somewhat “normal,” these are the things that make you strong. Stronger than you may think you are.