Category Archives: Stigma Fighters

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Chris Coombs

For everyone with depression, the experience is different. But you wouldn’t know it from our societal image of the black dog. A million and one cookie-cutter ‘signs and symptoms’ pieces online, will blithely tell you the things to look for. Sleeping too much or not enough, isolating, lack of personal care and loss of interest, are always near the top of these lists and what one comes to realise the longer one lives with depression, is that these lists are almost always for the benefit of people without depression. What we might call the ‘worried well’.

Because the thing that I notice when I know I’m truly in a hole, (as a depressive with over ten years’ experience), is almost never mentioned.

It’s the silence.

In this silence, it is peaceful, but nothing enters from the outside world. If you’re lucky you lose the concept of the negative thoughts at this point too – the positives have long since departed. But more than likely, they’ve just become old companions, they don’t sting as much – but they’re still cruel bedfellows although their chatter is so well known to you at this point you don’t have to pay attention. They are mantras and negative affirmations. You can look without seeing, you can have food without taste, and interacting with people is done as if from behind a glass wall. You see them, but they see only the mask you want them to see at this point. And it’s a role you’ve gotten used to playing. And of course, it is silent theatre.

I have on occasion spoken publicly, and in media about depression and my own suicide attempt. I am always asked variations of two questions. First “How are you these days?”, as if the trajectory for someone with depression was purely linear, and depression not an insidious mass of thoughts, life experience, perceptions, body chemistry and who knows what else. The second one though, is more interesting. I’m always asked a variation of “What’s it like when you’re down there?”. And this is where the silence comes in. I suspect that most interviewers I’ve dealt with are expecting me to portray a seething, tangled knot of grief, loss, misery, suffering, pain and regret – maybe with a tincture of psychosis or delusion thrown in for the sake of a stereotype. I always wonder if it is therefore a disappointment, when I tell them how bland the experience of depression at it’s worst is for me.

The silence of depression is truly extraordinary. In the days leading up to my first suicide attempt, it occurred to me that I should at least try and write a note to explain how things had come to this point. After an hour of abortive first lines – I gave up. Because I had nothing to say. It wasn’t that I felt too upset to write how I felt, it was that I felt nothing at all. The internal torture of depression comes earlier when you’re on the way down to your own dark finality. When you’re there at the end – there is nothing to do. In the cookie-cutter pieces, the symptom listed as something akin to ‘loss of interest’ is often seen (I think) to be like this silence. It is not. I cannot stress to you the sheer paucity of the English language to sum up that feeling of grey numbness. It’s not to lack interest, it is to lack that quintessentially human spark of personality and originality that every one of us has by virtue of being a unique individual.

And that’s how I can tell when I’m in real trouble. Andrew Solomon put it well when he said, “the opposite of depression, is not sadness, but vitality”.

I find this such a vital concept to try and explain, and yet I know that I will have failed miserably. That is OK, it’s that paucity of language that is the hindrance – I think that’s why so many people with mental illness, speak in simile and metaphor. My own personal metaphor? I direct you to a piece of music by Thomas Newman from the movie ‘Road to Perdition’ called ‘Ghosts’. And even that only gets a tenth of the way.

So often we see ‘headclutcher’ publicity photos to signify mental health problems – I always think they should just as often have someone stare blankly into the lens. That silence is something that needs to be appreciated more when we talk about what depression is.

10649652_915185021830378_171709918246398032_nMy name is Chris, I’m 28, I live in Worcestershire in the UK and I live with depression.

When not writing I can be found training to become a counsellor, delivering mental health training, speaking publicly when called upon about suicide and depression, attending humanist gatherings, exploring and debating political and disability issues, watching cricket, drinking cider and ales, singing a cappella harmonies from across the world (with particular interest in the traditions of the Republic of Georgia), procrastinating, and cuddling my cats.

Though not all at the same time.

Chris can be found on Facebook and Twitter.

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Karen Kaiser

Wrestling for Control of My Mental Health

Mental illness is a unique issue in that everybody has an opinion about what it is, how to treat it, the use/efficacy of medication, etc. Often, the person suffering doesn’t have a voice. In the past, I worked as a caretaker and nursing assistant for patients with physical illnesses; particularly cancer, diabetes, and kidney failure. I’ve also assisted people with neuropsychiatric diagnoses. There’s a distinct difference in the way we treat physical illnesses versus mental health issues. I believe this is due to the stigma attached to mental illness and a general lack of knowledge concerning the subject.

I’ve been dealing with mental health issues for so long that it’s hard to remember a time when I was healthy. I have bipolar disorder (bipolar 1), anxiety, ADHD and PTSD. At times I feel like a walking billboard for the DSM handbook. I was formally diagnosed in 2006, however I’ve been struggling since I was a teenager. I knew something was wrong in high school when I experienced repeated bouts of depression, mood issues and severe hypersensitivity. But at that time I had no name for what I was going through. I just thought I was different and somehow deficient. I was active in sports, had a close knit circle of friends and a supportive, loving home environment. Yet none of that shielded me from developing mental illness. That’s been the hardest for me to accept. Occasionally, I still feel as though all of this is my fault in some way.

Looking back on my college years, I see now that I was very troubled. I had extremely destructive coping mechanisms and no awareness of how my mental state affected my daily existence. I hit rock bottom during my last year of school. By that time, my lifestyle was wild and out of control. I didn’t care whether I lived or died at one point; I just wanted the pain to stop, and to find relief from the emptiness. I remember curling up on my bed in the dark one night and feeling the most alone I’ve ever felt. I knew things had to change or I wouldn’t make it. Soon after that I was introduced to Islam and eventually converted. I thought this was what I had been looking for and an answer to my problems. I was correct and mistaken at the same time. I did have a deep connection with Islam and knew I wanted to live according to this religious tradition, yet I was naïve in thinking I didn’t need to seek medical help for my psychiatric issues.

By 2006, I had a family of my own and was teaching at a private religious school in my area. I was studying in an intensive Quran memorization program and taught classes of my own, both during the week and on weekends. I thought everything was going great. But increasingly I noticed periods where I couldn’t function and I had trouble maintaining a sense of stability. I found a psychiatrist in my community with whom I discussed my concerns. He diagnosed me easily, as the symptoms were pretty textbook. I was ashamed but at the same time happy to have an answer about my mental health.

The initial response to my diagnosis was a superficial acceptance, that indeed something was wrong and I needed professional help. But quickly the tone shifted from one of understanding to blame and judgement. As my episodes became increasingly severe, people around me decided they knew what was happening with me better than my psychiatrist. They felt that mental illness had no place in a religious setting and that I needed to tap into my faith in order to heal. I was advised not to rely on Western medicine and that I simply needed to ‘toughen up’ and face my responsibilities as an adult. I listened to this advice despite my misgivings, and my illness got much worse, not better. After repeated episodes, meltdowns and unusual behavioral changes, I began to feel ostracized because of my instability. I finally decided to go to the hospital for treatment, as I recognized that I couldn’t handle this alone anymore.

This was the best decision I could have made and one that saved me. In the hospital I met so many people who knew exactly what was going on and how to help me. It took a long time and a lot of hard work, but I finally began to understand mental illness and how to proactively deal with my issues. After I completed a partial hospitalization program, I remember approaching the director of nursing for the psychiatric unit. In tears, I thanked him for his program, for giving me back my life and restoring my dignity. I told him that because of PHP, I had learned invaluable tools with which to handle my symptoms. And for the first time, I didn’t feel like mental illness was a curse that would ruin my life.

To this day, I still receive feedback on how to handle my diagnoses. Mostly from laypeople, well-meaning though they may be. But I’ve learned that the best way to address this situation is to listen to my body, and to my clinical team.

Tips for staying in the driver’s seat with your illness:
1. Always seek professional help and listen to the experts.
2. Know that it’s your right to deal with your health challenges in whatever way suits you best, not other people.
3. Never apologize for how you feel or accept being treated as ‘less than’ for having a mental illness.
4. Remember what they say about opinions 😉 and realize that when it comes to mental health, everyone truly does have something to say, helpful or not.
5. Find your tribe! I can’t say this enough. Find those who can relate to you and help you move forward despite any difficulties.
6. Trust yourself. Trust your intuition. This can be a struggle when your illness affects your thought process and overall mentality, yet it’s vital to your well-being.
7. Ignore the naysayers. At the end of the day, you are the only one facing your particular issue(s) and the effects on your life. Leave those who only want to tear you down for those who will lift you up and inspire you.
8. Advocate. Advocate. Advocate. For yourself and those in the mental health community. Your voice counts and your experience matters. Help yourself and others by speaking up and helping to combat stigma.
9. Be vocal and specific about your needs. People can’t help you if you don’t tell them exactly what will work for your situation. *You may need to be repetitive until they get it 🙂
10. Give yourself a break. Don’t beat yourself up when things aren’t going well; remember that ups and downs are a normal part of life, and it’s even more true with mental illness.

By focusing directly on how mental illness manifests in my life and by following my doctors’ lead, I’ve been able to not only function but actually thrive in spite of whatever obstacles I face. I wish the same for anyone with similar life tests.

IMG_0307I am an African American Muslim in the Washington, DC metropolitan area, learning to come to grips with mental illness and the role it plays in my life. I am an advocate for mental health issues in general, and more specifically for Muslims dealing with Mental Illness. My goal is to bring awareness to this subject and to do my part in erasing the the stigma surrounding this disease. I have 3 beautiful children who are my inspiration and my world.

Karen can be found on her blog, Facebook, and Twitter.

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Joseph Caputo

Spectrum. It’s a lovely, loaded word. I like it. Disorder? Thats where you’re wrong, kiddo.

I have Asperger’s Syndrome. What I’ve just told you tells you nothing. If you meet one person with Autism, you’ve met only one kind of Autism. The potentialities of the human mind are infinite. Our neurons separate us from the pack, like fingerprints or retinas do. Everyone with Autism is different. They have similar underlying stressors, but respond in a myriad of ways, all unique to their environment and personality.

I was diagnosed at 11 or 12, after years of ADHD, ADD, and ODD diagnoses and treatments.  All throughout that time, I resented being told I was different. Now that I’m older, I see what all were trying to do, but I’ve also seen what they’ve done. Seeing that my whole state of being could be rewritten with a single pill, to tragic degrees, devastated me. I worked very hard, often against my inner nature, to become whoever I needed to be to be free of the drugs. That creates a great sickness spiritually, and it came with other psychological effects.  One of the few effects still with me is a hypersensitivity to labels.  Labels stop thought, corrall it like rocks in a river. Enough labels-rapids.

When people hear the words autism, they fear the unknown. They seem to always believe that just beyond the curtain lie either stupidity or cruelty. For many, Asperger’s means a spectrum range from Forrest Gump to Adam Lanza (Spits internally) which is a delusional and dangerous ignorance.

My Autism’s specificity, as you can tell by this article’s tone thus far, is more emotional than social. The irony of my autism is that I have a natural skill in the social sciences, and society’s maladaptive behavior wounds me deeply, right in the soul. I feel so deeply that i can grow numb from overstimulation.

Though articulate, I’m addicted to life’s breathtaking, indescribably, ‘Yuugen’ moments. The insight I’ve gained from this worldview often puts me at odds with social norms and behaviors, not because i can’t tell the difference or don’t know any better, which in my youth was so often the case (and on occasion still is), but because I see things from a whole other psychological vantage point. Your light wavelength might be blue; I’m green. Your geography may be mountain; I am valley. Same reality, same phenomena of consciousness within existence, yet vastly different viewpoints.

The diversity and synchronicity of differing vantage points of perception are pivotal to social communication, understanding of existence, and personal wellbeing in ANY civilization, ESPECIALLY a democratic one. All of the sociopolitical ails we see in our nation today have a root in our inability to talk with each other.

Before my protest on November 26th, 2015, where i symbolically crossed a sacrosanct threshold to represent the American People taking back their rightful sovereign authority… I knew human nature. The public would get lost on the messenger, not the message. I would be received as a dissociative nutzo rather than a civilly disobedient citizen. Labels, mate. Labels change the mind’s perception, and devalues all words before they’re even spoken. It makes the labeled one’s points of view illegitimate. They place one in a box, with no way to connect, to anyone who perceives them as beyond the wall of understanding or appreciation. I knew all this going in to my protest, because I knew people’s stigma.

So why did I do it? A whole legion of saints had to exist in my life to show me i was better than who i thought i was. Stigma internalizes. Those angelic folk showed me i was more, and that i was worth fighting for. AND…SO…ARE…YOU.

The common individual is isolated, alone. The universe seems hostile, and God seems distant. Their illusion of selfhood is their torture chamber. Half alive, they press on, fighting as best they can to carry meaning in life and bring it to others. I call the average person a hero in the highest fashion.

Insanity is not a medical term, but a legal one, which exists to stress one’s grounded understanding. In short, the concept of insanity is not rooted in health, but in connection to the here and now, in comprehension of the events around us and of each other. In our cultural and psychological whirlpool that forged the word’s etymology, insanity gauges loneliness. We live in a very insane society.

Skeptical? Good! Continue to think, it’s important! I’ll quote humanistic psychoanalyst Erich Fromm from his 1955 book ‘The Sane Society’ to back me up, “Mental health cannot be defined in terms of the ‘adjustment’ of the individual to his society, but, on the other hand, that it must be defined in terms of the society to the needs of man, of its role in furthering or hindering the development of mental health. Whether or not the individual is healthy, is primarily not an individual matter, but depends on the structure of his society.” (Fromm, Sane Society) According to the National Alliance on Mental Illness (NAOMI), one in five adults experience mental illness in a given year, and one in five youths have experienced a severe mental illness in their lives to that point. Mental Illness has BEEN normal for a long time. Accepting it and overcoming it as a society has not been.

How do I fight Stigma?

I remember we are all equally responsible for un-wellness. The problem is deeply, intimately personal, and yet, no less systemic.

The phenomena of being is microcosmic and macrocosmic, intrinsic and extrinsic, exoteric and esoteric, it is a divine experience which we all must share and process. The one thing transcending the maddening duality is our human connection. If you’re suffering, you’re not alone. If you’re well, spread the wellness and share the load. The world is as bright and as glorious as can be when we live each day together. Spectrum: what a lovely, loaded word!

walkonJoseph Caputo graduated from the University of Bridgeport with two Bachelor’s degrees: one in Criminology and one in Martial Arts Studies. He is an avid reader of East Asian thought and philosophy, poetry, positive psychology, and differing political works. Hailing from Stamford CT, Joe is a volunteer for Curtain Call Inc., the Disabled American Veterans, and the Marine Corps. League, as well as an activist, actor, and writer, mostly known for his screenplays and poetry. His “Autism” has become his sharpest edge in “the knife-fight of living life.” When engaging in the illusion of “free time” he can normally be found learning something new or making the same mistakes.

Joseph can be found on Twitter.

Stigma Fighters: Maya Everly

My heart is telling me I need to leave and get out of town. My stomach is so nervous, it is threatening to wage a war and force me to completely shut down. This stupid blinking line is taunting me, saying I’m too scared to write the about ripples of 2016 that shattered me. Why is it so hard to write? Does the truth really set you free or just help you leave?

The only thing I can force a smile for this past year is the fact that I am opening up a new side of vulnerability. To me, vulnerability doesn’t mean to tell you about the different emotions I suffered this year. That isn’t scary to me. Being vulnerable is talking about what caused those emotions and your reaction; taking the time to see the significance in the different situations and share. Some people call that being an advocate; I call it being a friend.

When I say I’m your friend that means I don’t care to go to doctor appointments, your child’s recreational activity, or stay up all night with you. I want to hear the same stories over and over if it shows you love. One of my favorite quotes talks about how we aren’t on this Earth to perfect unconditional love. So when I say I’m your friend, I’m here to show you the broken love, the hurting love, the “please don’t push me away” love.

I would have given anything to hear that from a friend last year.

I tried to kill myself this year. I ended up in the hospital once as a preventative measure and then again after an attempt three months later. I tried to kill myself this year and that is easier to understand than how the friends who were “trained” to understand, didn’t. I died in that emergency room. I can’t tell you if my heart ever stopped—but to them, I died.

I had every resource possible, an encouraging counselor, friends and a boyfriend that cared for me. I believed that since I was a big advocate for mental health, that dying by suicide would prove just how complex all of this is. Being a burden was exhausting and I needed a way out. You may be thinking “that is a symptom of depression”. But no, I was. A close friend sat me down and said she couldn’t enjoy the best year of her life because I kept dragging her down. Someone else claimed I “stopped trying” and “gave up”. I was told how “I kept looking for someone to rescue me”. It took me six months to realize all of you were wrong.

You were wrong because I am not a burden. I am a human who was dealt some adverse circumstances and after months of asking to let you in, I did. I was not ruining your life; you didn’t have boundaries to distinguish me between a friend and client. And no, I sure as hell didn’t give up.

If you had stuck around, you would know that I pulled the trigger with the barrel empty, then ran upstairs because it scared everything out of me. Come over to my house; the bullet is still on my bedroom floor. You would know that after I took a bottle of sleeping pills, I told someone, rolled out of bed, put on my shoes, and walked myself to the ambulance. You would know when I was in the ER, I took the liquid charcoal, stuck a straw in it, and drank that whole bottle (normally they force a tube up your nose and down your throat). You would know that in between losing consciousness in there, I thought about seeing my friends again and fought a little harder. You saw what you wanted. And I’m sorry, but you didn’t save me; I saved myself.

The reason I am not writing about their side is because none of them would talk to me about what happened. The last conversation we had I told them I need to hear what happened from their perspective because I was too “sick” to really see what was going on and when they are able to talk to me, I’ll be waiting.

I’m still waiting.

So what is the point? Why am I telling you about my depression and trauma? Why should you care? I need to share that it is NEVER okay to call someone you clearly know is struggling a burden or just cut them out because you don’t know how to deal with the situation. Keep inviting them out even when they bail. Ask them to go on an adventure with you. Simply ask them, “Even if you can’t feel it, how can I love you today?” Most importantly, it is unacceptable to think you don’t matter. Of course, you do. I know you matter because I’m learning that I matter too.

I hope this year you remember to love
Love well, love hard
Love until you are broken
Love until its messy
Love those who ask for it: with words or not
Love yourself because it’s a trend I hear
Believe in love still; and still, believe in love
Without it, what good is a new year?

unnamed (2)Maya can be found on Instagram. 

This piece was previously seen on Thought Catalog.

 

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Brian R. King

I was born in the state of infancy to a working-class couple who were young and inexperienced. By the end of their 20s they had four children, the third of which was me.

I was a very anxious baby such that I screamed and cried in my mother’s absence. I was so inconsolable I had to accompany them on trips and date nights.

As a child I remember being quiet and lonely. I filled the void with television and my imagination.

School was very difficult for me. I wish I and socially awkward which made me a target for bullies. Teachers were very impatient with me as I struggle with reading, math and instructions from one moment to the next. I was accused of being lazy by some and mentally retarded by another.

If they only knew how badly I want to succeed and was truly doing the best I could with what I had.

The bullying continued into junior high school where it intensified. It was in eighth grade that I finally reached my limit. That’s when one bully was on the receiving end of a few well executed martial arts techniques I learned from my father. The word got out pretty fast that I wasn’t to be underestimated. Some of the verbal teasing continued but now any would-be bullies knew better.

It was in high school that I began to spread my wings as I discovered my sense of humor and endeared myself to many of my peers. Overall, I consider high school something I survived. I had many girlfriends. Few of those relationships lasted very long as my social awkwardness left me inept as to how to carry a dating relationship.

As high school graduation approached something happened no one could have predicted. A recurring pain in my abdomen was diagnosed as an aggressive form of testicular cancer. I received surgery and spent the summer after graduation and chemotherapy.

During that time my peers moved on with their lives and I was virtually alone. When I learned I was cured of my cancer and move forward with my life. I was angry, bitter and confused. I was also determined. Determined to create a better life than the one I had thus far.

I chose to seek a degree in social work. In my late 20s I married my first wife after a whirlwind romance. Our 12 years together produced three beautiful boys. All of whom have been diagnosed with ADHD and Asperger’s syndrome.

It was through them that I received answers as to why my childhood had been so difficult. I saw testing for myself and received diagnoses of ADHD, Asperger’s syndrome and dyslexia. We also discovered that my father has Asperger’s and my mother has ADHD. This revelation about our family led to several years of heartfelt conversations and many requests for forgiveness.

I responded to my son’s diagnoses by dedicating my life to preparing them for a world or it would otherwise eat them alive.

But before I could teach them anything. I needed to learn these skills myself. The more I learned about effective communication, healthy relationships and navigating life, the better. When I became proficient in skill I would teach my boys.

It was when I began attending a parent support group for Asperger’s that things really changed. I didn’t disclose it first that I have my own diagnoses of Asperger’s. I was more inclined to sit quietly and listen in the hope of learning things that could help my boys.

I’m fortunate, in that I have a remarkable ability to explain my experiences in a way that drops the curtain between a parent and a child with Asperger’s or ADHD.

It wasn’t long before I realized these parents were giving each other well intended but incorrect information about relating to and disciplining their children with Asperger’s. It wasn’t in hearing these statements that I decided to speak up.

After a month or so, meetings would begin with a parent stating, “I have a question for Brian.”

When the parents learned I was a social worker they assumed I worked with ASD children for a living (I didn’t). They begged me to begin working with their children because I gave them insights and strategies they hadn’t received from years of working with other professionals. Strategies that WORKED.

After about a year of listening to their insistence, I opened a small office and word spread so fast, I was able to quit my day job four months later. I haven’t looked back since.

All these years later, I’ve written 5 books and present internationally to parents and educators who want to learn my unique and transformational perspective on living with Asperger’s and ADHD.

I’d like to tell you it’s been smooth sailing these past few years. But eight years ago my first wife decide how far to leave me and our sons, to be with another man. I was devastated and humiliated. I was suddenly a single father with three sons to raise. They had endless questions about why their mother left. Questions I couldn’t answer.

It took time but I was able to get back on my feet, to learn to trust again and learn to love again.

I wish I could say it’s been smooth sailing since then.
But over the past 6 years or so, I began experiencing a decline in my health. Many of my joints were becoming weaker and I was becoming exhausted by simple activities like walking around the block.

My joints were also in constant pain and my muscles as well. It was four years ago that this decline was identified as Ehlers-Danlos Syndrome. It’s genetic, there is no cure and it will only get worse. What makes it worse is the fact I passed it on to my two youngest sons.

So what have I done in response to a life that seems bent on giving me one more thing just as I’ve come to terms with the previous one? I grieve, I educate myself, I commit myself to learning what I can from the experience. Then I teach what I’ve learned to others. Beginning with my boys.

That’s the meaning I have found in a life filled with struggle. A life that constantly shows me what it means to be human.

 

sidebrianBrian R. strategies members

King coaches parents and educators internationally for motivating and communicating better of the Asperger’s & ADHD communities.

on with

He has a Master’s Degree in Social Work and Asperger’s, ADHD & Dyslexia. He’s also the father of three sons with Asperger’s & ADHD.

As a Coach, Professional Workshop Facilitator and Keynote Presenter who has been wowing audiences since he was 17 years old, Brian has become increasingly known for his story of resilience in the face of Learning and Physical disabilities to become a #1 Best- Selling Author and successful Entrepreneur.

In his popular keynote presentations, Brian reveals key decisions we all must make in order to be consistently successful regardless of our challenges.

Brian R. King can be found on his website, Twitter, and Facebook.

Christina Leigh

You Are Not Your Eating Disorder

Of all of the ups and downs we have experienced with our son’s illness; the hospitalization and the setbacks, one of the hardest is hearing my son apologize for his condition. A recent experience really brought to light for me just how much my son feels he has to apologize for his eating disorder. It is as if he is saying, “ I have an eating disorder, please accept me and love me anyway.” It is as if he should be grateful that anyone could care for him and want him as a friend or a spouse. It was almost as if his illness made him undeserving of those things and that he is lucky if someone feels differently. It makes him either hide it altogether or feel that he has to tell it right away so people can decide whether he is worth befriending. What a choice! As a mom, this was very hard to watch. Our son is not his illness.

I don’t think that this is entirely his fault, either. Recently he was telling me of an experience with relatives of his fiancée. While he was not with her, a scenario was proposed to her asking what would happen if they had a baby and she had to be away at a family emergency. The scenario left him alone with the child and unable to go to the gym and exercise. The gist was that he would either abandon the child in order to get to the gym or his wife would not be able to be away from home. Bottom line: he can’t control himself. She was also presented with the ‘what if a setback occurs’. Why would you want to deal with that? Wouldn’t it get very old and irritating to have to deal with his dietary guidelines while recovering from a setback? I asked my son how he responded. His answer was exactly what I expected. He was put on the defensive and he responded by defending himself. In this case defending himself was apologizing for his eating disorder. It was “understanding” why these worries would come up and it meant the potential of a lifetime spent proving himself. I was offended. I wondered if he had a medical illness or condition would his fitness as a husband and father be so readily questioned. Would there be the same doubts about wanting to deal with a setback or flare-up and the dietary changes that it would entail if we were talking about diabetes, high cholesterol, or high blood pressure? Would those symptoms seem so distasteful? I doubt they would because they are considered part of human frailty. We didn’t cause the illness and we can’t always prevent the symptoms. It is accepted that these things are not completely within our control and, even with regular medical treatment, flare-ups can occur.

Illness or conditions that involve the mind and fall under the heading of mental illnesses or conditions are still treated very differently. They are often thought of as something that we did; something that we can control or something that leaves us totally out of control. There is often not a middle ground. The symptoms are frequently treated with disdain and fear. The idea that he would leave a baby unattended or put his need to exercise above the needs of his child suggests that he has no self-control, not to mention the suggestion that he is selfish. Eating disorders are often viewed as selfish. They are still many times viewed not as a disorder, not as something that the person didn’t want or ask for, but as something vain and self-centered, and lacking in any self-control. The idea that someone with a mental illness or condition cannot control themselves still stigmatizes and it still hurts.

The scenario presented to our son’s fiancée was intended to cause doubt. The tone clearly suggested a bias that I don’t think would have existed with other illnesses. There is a lot of evidence that a poor diet and lack of exercise contributes to Type II Diabetes and heart disease. There are many other factors in play and the person with these diseases didn’t ask for them and didn’t do something to knowingly cause them. Imagine a scenario where a woman is asked about her fiancées Diabetes. Imagine he had eaten a very poor diet prior to this diagnosis and the question ‘what if he can’t control his love for junk food and his Diabetes worsens. Suppose his kidneys fail and he can’t work and support his family? How would you handle dialysis? Why would you want to have to deal with his dietary restrictions?’ What if the question of having to work with the dietary restrictions of high cholesterol, high blood pressure, heart disease, or kidney disease was called into question? The person on the defense would likely be the person asking the questions. How unfair it would be to suggest rejecting someone for something outside of their control. Eating disorders are not ranked the same way. The person with the eating disorder is on the defense.

As a society we have certain comfort zones. We are comfortable talking about health as it relates to medical illness. You can go to a restaurant and request a special diet for a whole host of reasons that would go almost completely unnoticed. Religious, cultural, vegan, and health all fit the comfort zone. You can shake down the menu with the scrutiny of a food critic because you want to find low carb, low cholesterol, low sodium, or low calorie for the purpose of dieting and little, if any, eyebrows will be raised. In fact, it might lead to interesting dinner conversation. Reveal that you need a special diet because you have an eating disorder and require certain portion sizes, levels of protein, variety and the reaction is likely to be one of discomfort. Scrutinize the menu because you see a lot of “fear foods” on it, or because you are worried about the portions being too big and feeling full, or about not knowing the caloric content of the meal, or how it is prepared and you will likely find awkward rather than interesting dinner conversation. Try saying any of the above as a male and the experience will likely be even more awkward.

My son seemed shocked that I was offended. I am not out of touch with reality. I am aware that there would be questions about the eating disorder and whether it is being treated. That would be a normal question with any illness. Wanting details and some information and reassurance is also normal. All parents want their children to know what they are getting into when it comes to marriage and that is expected.

There are no guarantees in this life. Whether your condition is diabetes, heart condition, or arthritis, flare-ups and setbacks can and probably will occur. With good medical treatment and follow-up, these flare-ups are usually managed and people generally lead very normal lives. Mental illness isn’t different. Flare-ups and setbacks can and do occur. They are also managed with good follow-up and treatment and people also lead very normal lives.

Any illness or condition should surely be shared with someone you intend to spend the rest of your life with, but beyond that it should be regarded as your own business. It should be something that you choose to share or not share with people that you meet. It shouldn’t be the feared “secret”. It shouldn’t be a game changer and it shouldn’t define who you are.

There shouldn’t ever be the need to apologize for human frailty, regardless of what form it takes. It is, after all, human and none of us escapes the human condition. Mental illness and addiction isn’t something people ask for and they didn’t knowingly “do” something to cause it. More and more evidence points to genetics just as many “medical” illnesses do. The idea that we make a diabetic apologize for his diabetes is ridiculous and so should be the idea of apologizing for an eating disorder, OCD, Bipolar Disorder, Schizophrenia, or any other illness. The diabetic is not his diabetes. Our son is funny, loving, kind, caring, responsible, hard-working, and he has an eating disorder. It is only a part of his life. Our son is not his eating disorder.

I am the mother of a son with Anorexia. At the time he was diagnosed, this was very sparsely recognized among males. My son and my family were very alienated and stigmatized as we tried to help him. Male eating disorders were not well received or recognized by the medical community or in the mainstream. I started my blog because of the stigma he and our family faced, to help other mothers and caregivers know that they are not alone, and to offer support to those of us “outliers”.

Christina Leigh can be found on her blog and Facebook. 

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Stigma Fighters: Lisa

Hello, I am a beautiful soul that has Borderline Personality Disorder. I have lived with it for 52 years, 41 of those completely undiagnosed. I was molested by my dad from the ages of 3 to 13, of which I started remembering in 2005 which was long after the event, long after the drug addiction and sexual abuse, the rapes, the inability to work…all of the things that society make one a “good human” I just couldn’t quit grasp. I was a square peg trying desperately to fit into a round hole until I had no more fight in me.

Living with undiagnosed BPD is horrifically difficult; not just on the person who has it, but for all those around the person. I was angry and so completely full of self-hate, and I truly believed that I was a huge mistake, there was no purpose here for me and I hated myself so much that I began carving on my wrists when I was 18. I grew up in a very Catholic, very dysfunctional family and carving on myself as a way to quiet all the inner pain was just highly unacceptable so I waited. I waited until I got kicked out of my parent’s home and ended up at my sister’s and doing my first bag of weed. I waited.

What I didn’t know then is that BPD waited as well.
For me, the reason I carved on myself was because it brought a stillness to all the ginormous negativity going on in my head. I was suffocating from the pain and rage in my soul and cutting was one way to quiet it down; the only way. Drinking and using wasn’t working anymore. Cutting quieted the voices in my head so I could functionally not function.

Back in the ’70’s my mom tried desperately to get mental health to recognize and identify what was wrong with me, but they couldn’t. They didn’t have the answers other than I was a needy child who would learn to fit into life if I just kept trying.

And so I did. I kept trying until it almost killed me. I spent 24 years without a roof of my own over my head. A great deal of that time I was living on the streets, eating out of garbage cans and doing whatever, or whoever, it took to survive. I got cleaned up when I was still 21 years old, in 1986. Oh I wish I could tell you that my life changed dramatically however it just didn’t.
I spent 19 years in AA before I got the BPD diagnosis. I got kicked out of a woman’s shelter for not being able to control my rage, and i was in a big city left to wander the streets all over again.

I was sent to a mental health professional (I had spent my whole life telling them precisely what I had thought of them) in order to receive SSI. That is when I was told the life changing news…”You have what is called BPD and we recommend DBT therapy”…and I was shocked.
Shocked that I actually, after all those years, was told yes, in fact I was not crazy; I simply had an over abundance of large emotions and I felt at a level most people never do…

And that was ten years ago. I went into DBT (Dialectical Behavior Therapy) for a year and learned skills; I learned how to pause, I learned how to breathe and I learned that yes, in fact, my brain wasn’t wired the same way as everyone else’s AND THAT’S OK. I haven’t cut on myself for a very long time (Thank Goddess) I have been clean and sober for 30 years and most important…I have payed my own apartment rent for 10 years now.

I live in an apartment on the coast, and it is a place I have always dreamed of. I know peace and am not afraid of the okay that happens regularly in my life today. It has been a lot of hard work, I do mean A LOT, and it is so very rewarding. Today I am not a problem to be fixed; I am a soul to be loved. Borderline Personality Disorder is what I have. It is not who I am.

IMG_7443I am a strong, honest, independent woman coming into my own Gypsy Soul. I love the ocean, the woods, strong coffee, deep conversation and solitude.
Thanks for reading my story.

Lisa can be found on her blog, Twitter, and Facebook

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Angie Miller

Depression: Thinking in Metaphors

I am depressed. The realization comes barreling down on me like a truck with no brakes, slamming headlong as splinters and shards slice open my reality. But the doctor isn’t in the office today. And it’s the weekend. And the counselor has no available openings for months. And I realize that I am standing at the curb with my suitcase properly packed and a sign around my neck, but nobody is coming to get me. Nobody.

Logically, I can read the medical studies and understand that a recent neck injury, compounded by a head cold and deadline stress, has created chronic inflammation which produces cytokines which degrade serotonin and tryptophan which results in me sitting on the couch, wrapped in blankets, sobbing through days for no discernible reason. Logically, I understand that this is not me nor is it permanent. Logically, I know the laws of science and medicine have overtaken me.

But logic doesn’t much look after my heart these days.

In the summer I sail a Minifish–a small, one person boat. I am a novice and overly-conservative sailor, hesitant to take on fierce gusts, and when I start to pick up too much speed for my comfort, I haul the sheet tight and turn the boat a little out of the wind. Slowing myself down while my heart races ahead, I hold those sails as tight as I can. That’s how I am in this depression–sails hauled, boat steady, terrified of tipping. Slowing down as though there is no wind. Looking around for help and realizing I’m on a one-person boat. Nobody can help me. Nobody.

I scroll past copy paste Facebook statuses about reaching out to those who have depression, because I know people don’t actually do it. Not because of their intentions, but because they don’t even see it. And they don’t actually mean it if you are somebody they expect something of. I have to hide it from as many as possible so that I can be a functioning human being who walks and talks, while others are unaware of the immensity of this kind of isolation. The thing about depression is it is lonely as hell. I am lost, with a flat tire, in the desert. The road is straight, and if somebody saw me, I know they would help, but there is nobody there to see it. Nobody.

With depression, I have no words, and the ones that do occasionally bubble up are so replete with self-loathing and disgust, I cannot imagine anyone wanting to be near me. I don’t want to be near me anymore, so I withdraw and people start leaving me alone because it appears solitude is my wishful solution. The quiet feels like the first ice on the winter lake–glassy, serene, fragile. In the sudden moments when I reach out and a friend doesn’t immediately respond or has to get up and go about life, because life keeps going on, I feel betrayed. I knew I was alone all along and somehow they tricked me into thinking somebody was there. In a sudden realization, I am inconsequential. I crack, shattered glass spilling onto a plush carpet to be painfully discovered later, on my lacerated hands and knees, picking it up alone. Because nobody is there. Nobody.

In times of adversity, I have always been able to close my eyes and find that pulse that pulls me up out of dark waters. I have been able to square my shoulders and march into battle. I have been able to breath in the fortitude that blows from brutal north winds. I am strong and resolute, running miles to find my stride, to build my tenacity. But not today. Today I am afraid to run, lest I split open and all of my insides, all of my pain, fall out of my fragile shell, spilling through my fingers, like catching water. No, I will not run today. I will not thumb rides. I will not rock my boat. I will not search for broken pieces.

Because today, there is no me to be found. When I most need myself, even I am not there.

headshot-2Angie Miller is an award-winning teacher, traveler, and freelance writer.

Angie can be found on her blog. 

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Sparklle Rainne

I had just transferred colleges and moved two states away. It felt like it’d be a comfortable environment, just four hours away from the town that I grew up in, but it wasn’t going to stay that way for long. The school was a dream come true, as far as administration and student accommodations went. It was awesome, considering the fact that my last college hadn’t even had a cafeteria. They even had a police station on campus, which I didn’t expect to need, but, unfortunately, it came in handy for me later.

Well, actually, it wasn’t that much later.

I had been in school for a solid week, but I had met a small group of people in the area prior to school starting. We were quickly becoming friends. They seemed fun and welcoming, laid back, a tight-knit circle of people that I felt like I could really get close to. One of the first things that I do when I move somewhere is look for friends. Despite having an anxiety disorder for my entire life and enduring sexual, physical, emotional, and verbal abuse as a child, I’ve always kept myself in the mindset of “most people are good.” Something that I had always wanted was a tight-knit group of friends. We had been hanging out for about a month and I really felt like we were going to be close.

One of the guys in the group liked me. I had turned him down and asked to just be friends, which I thought he respected. He knew that I had been abused as a child and that I am abstinent. This experience was very recent, so as I write this, I’m having a hard time deciding how much to share. This all builds up to one night – the night that he slipped something in my drink. It was a Saturday night and a few of us were hanging out. The previous Thursday, we had all hung out and things seemed as innocent as they could possibly be.

I blacked out entirely that night and do not remember much. I came to for a clear (yet quick) few seconds while vomiting and screaming for him to get off of me in the back of a car, then blacked out again. I do not remember how I got in that car, nor do I remember how I got out of it, but what I do know is that I had bruises and welts on my left side and that when I got picked up by a taxi that night, I was laying on the side of the road. I remember seeing the word “taxi” in a blur, knowing that I needed a ride home, and getting in the taxi. I don’t remember how the taxi was hailed. I only know that I was laying on the side of the road when they picked me up because the taxi company told me that via phone call when I was trying to piece together what happened.

I stayed in bed the day after everything. I was sick as hell, for one thing, but mainly I was just trying to process everything and figure out what to do. When I went back to school, I told my instructor. I didn’t know who else to go to since I was so new to the school and city. He was very kind and helpful. He told me to go to the police station on campus and file a police report, so I did. They brought in a female advocate from the school – she came with us when the police picked up my clothes from that night at my apartment and stayed with me through most of the time that I was at the hospital that day. I’m so thankful for that.

I can’t imagine going through that process alone. I was at the hospital for six hours waiting and getting checked over. The advocate from my school connected me to an organization that provided me with a cab voucher for the ride home from the hospital right before she left. The nurse said “that’s a good thing to know about, for the next person” when I got the cab voucher.

The next person. I couldn’t stop thinking about the next person – who, what, when? Will their predator be someone they know? A stranger? Why does anyone have to go through this? Why did it happen to me? When I filed the police report, they asked me if I wanted to press charges. I asked what that would entail. I was told that if I pressed charges, I’d have to face the person who did it in court. I couldn’t imagine having to see him again. I didn’t want to keep repeating and re-living what happened. I didn’t press charges.

What I did instead was drop out of school and leave. I tried to live normally for a few weeks, but the person knew where I lived. I lived alone and off campus. My apartment wasn’t the safest. I knew that he’d obviously find out that I filed a police report and I was terrified of what might happen when he did. It was the first time that anything really broke through my “most people are good” mentality. It has made me afraid to make new friends. It has made me afraid to get close to anyone. I ended up getting a greyhound ticket and scheduling a job interview near where my mom lives. I told myself that if I got the job, I’d leave school. I got the job. I quit school. Now, I’m just taking it one day at a time and trying to figure out how to move forward – how to finish my degree, how to feel safe, where to move, etc. Never leave your drink out of sight – not even with friends. I hope to see a world where every survivor gets justice. I hope to see a world where no one feels so helpless and ashamed upon coming forward.

12095196_771444286297790_2719231150435317770_oSparklle Rainne is a singer/songwriter that lives on the West Coast.

Sparklle can be found on Twitter and Facebook.

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Derek Simmons

There are so many paths I took to reach this point in my life; whether it be sensory integration therapy till I was 12, being on various ADD medication before quitting them cold turkey at 23, multiple mental evaluations from relationship fallouts, anger issues as a teen from parents’ seperation, constantly gaining and losing employment in less than a year’s time, winning and losing the trust of friends, feeling out of place even with my closest friends or even just fighting my own demons because of trust issues.

My path is riddled with issues stemmed from my relationship with my Mother, living in a religiously conservative household, all the while going through the struggle of understanding “grey areas” in a failing education system that did not cater to kids with special needs. My Step Mom coming into the picture, as high a hurdle that was in the beginning, ended up being the best thing that could have happened; her compassion and community service to Veterans was a far cry from my birth mother’s “all for one and one for me”, as my Dad would put it. My Father is also a pivotal part of my life to this day, even if we don’t always see eye to eye. My bouts with depression come in waves and is usually intensified with the moniker “seasonal depression”, especially during times you are supposed to be spending with loved ones. I have never been in a steady relationship, outside of 2 months in college during the spring. One of the biggest reasons for that is, well, my height. At 6’6″ and usually wearing some leather or denim attire, the stigma I pose to others is intimidation, especially during my long hair days. Even having lost 80 pounds, I still stand out in the crowd for sometimes the wrong reasons. Because of the constant teasing in grade school and not being able to rely on people when I need them, it’s hard for me to be close with anyone; even with friends I have had for several years, it is hard to take things at face value because my mind focuses on the negative. Speaking of which, my mind is truly my own worst enemy.

One of my big debilitating factors is I perseverate on issues that radically go out of control that don’t even exist. I tend to flop somewhere between realist and pessimist when it comes to my outlook, especially when my aspirations are so high and I put unnecessary pressure on myself. Over the years, my Dad has tried to remind me that I have always been a fighter and I have constantly been growing and defying expectations; from being born prematurely with Gaestroschisis to living independently and the 32 years in between, this journey has been filled with pain and perseverance of all levels. It is because of what makes my story that I cannot judge what others have gone through and why I will go out of my way to assure people are acknowledged for their strengths. Many have said I care too much, as my empathy directly effects my mood based on my surroundings. I have accepted that that much is true, but I wouldn’t have it any other way. I am not blind to current events and even that can effect my mood, even if it doesn’t have anything to do with me personally. I have had to do a lot in recent years to not let the negativity of the internet absorb my psyche; just as with anything else, change comes in small steps making a big difference over time.

I’m a gamer, but do not necessarily follow the mainstream view of gaming journalists and internet personalities. In turn, that makes me feel out of place and even weirder than I already do at times. The small steps I’ve had to make to just enjoy things again have taken a long time and by no means do I say I’ve cured what ails me, but it is important to recognize in the moment what makes me happy right then and there. My goals for this year are to embrace what makes me feel happy and the right kind of people to motivate me in the direction I want to take my life. I have big dreams, so they can be big shoes to fill. (Bigger than my 13 Wides, even.) Music, jokes, voices, performances, editorials, motivational pieces.

All the things that would’ve been a pipe dream in my youth can be fully realized with the modern culture of the internet. At times I do feel old trying to compete with these young bucks, but my younger friends keep me young at heart and that alone is worth celebrating. My story is just one of many jumbled messes in this ever expanding world, but I hope that you got something out of this. When I showed a friend’s parents Mozart and the Whale to help describe Asperger’s, their response was “does your symptom define you or do you define yourself?”. There is a big difference between being the condition and living with the condition; not just living, living to the fullest. I try to do that every day I can to the best of my ability. Through many jobs and many teachers along the way, my story is carved behind me; I find the best way to live is to keep moving forward.