labels, part 2

The use of labels to describe varied mental states is controversial and in many cases detrimental to the individual being labeled. One issue is that people don’t fit neatly within the confines of the imposed labels. To borrow from the peer movement, “we are more than our diagnoses.”  And this is absolutely true. I am more than my label of schizophrenia and publicly admitting I have this diagnosis places a whole other set of labels one me. Labels like “disabled,” “limited,” and in need of “accommodations” aren’t pleasant. They don’t instill hope for the future. Those are the politically correct ones. You can, I’m sure, imagine the other not so flattering ones. It goes on and on.


Some of my colleagues are totally against labels. Some believe that self-identifying with any label causes self-stigmatization.  And I agree to a certain extent. I agree in the case when an individual allows that label to limit them in any capacity whatsoever; whether its employment, relationships, family, life goals, etc.---then yes it’s a problem. 


However, what if a label is necessary for an individual’s recovery journey? It was for my recovery. Prior to getting my diagnosis, I was floundering. I had no idea what was up or down. My diagnosis explained a lot for me and it helped me secure Social Security Disability benefits that I needed to survive. Those benefits sustained my son and I while I couldn’t work. Without the label there would have been no benefits and without the benefits I have no idea how I would have lived. This is the case for many individuals.


So looking beyond basic survival, there is also perception. Perception is crucial. Certain negative perceptions fuel stigma and stigma kills. I live in the clinical world and the peer world. Every day I see clinicians going about their work trying to make a difference in the lives of the people they work with. Their hearts are in the right place, even if their tactics are not always “helpful.” I see peers challenged to stay empowered and empower others. 
As a peer specialist I use my label of schizophrenia to shatter stigma. I observe well-intentioned clinicians talk about the “schizophrenics” as if they are a monolithic group with one set of behaviors and characteristics and I shatter their perceptions. I shatter their presumption that everyone with that label is unemployable, unable to live on their own, unable to raise their children, unable to make decisions about their medical treatment etc. by just living my life transparently. 


The only way to make a profound and personal impact on these clinicians is to self-identify as a person with the label of mental illness. It’s their language and I use it to make an impact on them that I hope will affect their treatment of others like me. 


Self-identifying as a person with a serious persistent mental illness also helps me empower the peers I support; especially those who have just received a diagnosis and are trying to come to terms with it. It’s daunting to hear a doctor say you’ve got this or that and its forever. So when they talk with someone with the same label who is doing well, living life on their own terms, the result is hope. And hope is the cornerstone to recovery. That’s my goal in doing the kind of work that I do. Namely, to instill hope, fight stigma, to empower and to ultimately create a broad space for us all to live our lives on our terms. 

suffering on purpose

I’ve talked previously about suffering when an individual has disturbing or extraordinary experiences that are sometimes labeled mental illness. Often times these experiences can bring about suffering in themselves or at the hands of others in the medical community. Whether the suffering comes from within or without, the fact of the matter is the suffering and its after effects are real. They are real and have very real consequences.

In this post, I want to borrow from the mindfulness community and my own faith tradition and talk a bit about acceptance of suffering. From my experience my greatest and most damaging suffering has come from wanting my circumstances to be somehow different from what they were. I have suffered because I wanted more money, more status, more possessions, more beauty, and in recent years I’ve suffered because I’ve wanted some of my experiences to stop.

It has been in this incessant wanting that I have suffered the most. In the midst of my suffering, the tears, the episodes of traumatic fear, the distressing voices I would call on my Higher Power to take it all away. It never occurred to me to look for meaning in those experiences. It never occurred to me that there was a reason I was having these experiences. It never occurred to me that these were opportunities for real and meaningful growth.

So, over a span of time two things happened for me. An awesome healer suggested I stop fighting against my experiences and really be present for them. She proposed I sit in them and listen to what they were trying to tell me. She suggested I accept them as a part of me versus trying to exorcise them as some sort of external entity. Radical thinking. The second thing that happened was that through the teachings at my church, I came to see that Jesus went through a similar experience. I came to see that He suffered contemplating dying by crucifixion so much so that He sweat blood. And I learned that when He accepted His fate he experienced peace, courage, and strength.

I’ve had many labels over the course of my life, many struggles as we all have and suffered greatly. However, what I have learned that has transformed the quality of my life, has given me peace, courage and strength in the midst of suffering is acceptance. Not blind acceptance, but acceptance with the faith that there is always meaning in my suffering; that there is always something to be learned, an opportunity for growth.

Instead of masking my suffering with food, drugs, or loveless relationships I embrace the lessons. I use the pain to learn more about myself, my strength, my community and I use the pain to empower myself and others. I use that suffering to connect with others to ease isolation, to humanize extraordinary experiences and to foster hope. Suffering on the surface appears futile, but it has a purpose and the potential to heal beyond our expectations. 

labor pains

When I think about recovery I think about the night I gave birth to my son Joseph. Yes it was painful, but it was also exciting because I was living in the highest state of expectancy of my life. I was bringing forth someone brand new that had never before existed.

Recovery is like that. You are becoming something you never were before. Someone brand new. And like childbirth it can be painful. Recovery requires growth. It requires taking a broad and deep look at yourself. To live in recovery you must look at how you talk-do you speak positivity into your life? You must look at who you spend your time with-are your friends and family in support of your goals? You must cultivate purpose -do you volunteer or work in an environment that honors your contributions? You must advocate for your healthcare-are you working in partnership with hour healthcare workers for the best possible plan for you? If you can answer yes to these questions then its smooth sailing for you, but if not, this is where the pain comes in.

If you answered no, then you’re going to have some recovery labor pains. Recovery got real for me when I took the training to become a certified peer specialist (CPS). In this two-week training they gave the participants a button at the start that said “I’m a walking miracle.” At first I just put it in my purse. It didn’t jive with the language I spoke back then about myself as someone with a mental health diagnosis. I didn’t have any positive talk about that so I couldn’t relate. By the end of the training I was color coordinating my clothes to match that button!

In that training I came to understand that the coping skills that I had used to thrive and survive made me an expert on me! And the training I was getting made me a competent peer specialist! Whoa, talk about bringing forth someone brand new that had never before existed! Those trainers had me fired up. I left that training with a new idea of who I could be and what I could do.

When I got home from the training I told everyone who would listen that I wanted to do what everyone had told me that I would never do. I wanted to work full time as a CPS. My family cautioned me against it. Some of my friends warned me that the stress would send me back to the hospital. My co workers expressed their fears for me. There was tremendous pushback.  Labor pains. But the seed had been planted. It was just a matter of time. And I cried because I knew if I were go grow into this vision I had for myself I was going to have to part ways with people who had been my support. I had to create new boundaries with old friends. I couldn’t share my new goals because they were naysayers. Some relationships don’t survive recovery. Some relationships don’t survive recovery because when you take a good look at yourself and change, you force those around you to do the same.

How do you move forward with this new version of yourself when your supporters stop supporting you? You realign yourself with people who are where you want to be. That’s what I did. I kept in touch with the people I went through the CPS training with. I had to create a new support system. It was painful but necessary. And all the while I was looking for opportunities where I could be involved in that reflected my new vision of me.

So now, four years later I’m still working my recovery. Still going through pains though not as dramatic, establishing new boundaries, letting people go and welcoming new supporters in. 

romance and recovery

Recovery and romance; where to begin? There’s a lot of discussion in the peer community about individuals with mental health diagnoses seeking out and cultivating romantic relationships. One line of thought is that it’s a risky endeavor to add the stress of managing this kind of relationship with the challenges of managing a mental illness. Another line of thought suggests that romantic love can be a source of strength and a natural support in the journey towards wellness.

I subscribe to the latter point of view. Every healthy relationship can support recovery. Friendships, family bonds and romantic partnerships are the emotional artillery needed to live in wellness. Romantic love provides support on the most intimate levels. There are challenges we can share with family and friends, however, romantic partnerships create a safe space for full disclosure and acceptance.

So, in a perfect world, our romantic interests would be open-minded, compassionate, and non-judgmental. This is ideal right? And this happens for many of us living with a mental health diagnosis. For many of us there is someone who is strong enough to be a witness to our successes and setbacks. Someone who can love us unconditionally and help us stay on track. But, what about when we are rejected because of our challenges? How do we process being rejected for something we have very little control over? How do we avoid feeling damaged and unlovable when confronted with another person’s fear and prejudice?

In my experience, transparency is the key. Because I am open and transparent about living with schizophrenia, the stigma loses its power. Transparency, openly telling one’s recovery and wellness story humanizes something that most people are terrified by. Let’s face it, most people rely on the media for facts and the media has a poor track record of portraying individuals with a mental health diagnosis. So countering these negative stereotypes with stories of hope and wellness is essential.

What I’m advocating for is disclosure which is highly personal. For some it’s terrifying because once you let the cat out of the back there is no turning back. Why do we need to tell the people we encounter we have a diagnosis? For one, it frees us from fear. For another it allows the people we meet to make an informed decision about whether they want to interact with us. For some people, mental illness is a deal breaker. Without disclosure, this essential part of us becomes a weight around our neck that will drag us away from wellness.

When do we disclose that we have a diagnosis and are living in recovery? It’s going to be different for everyone. Most of the time when I meet someone it comes out pretty early on because it’s an integral part of my job. Most people outside of the peer community don’t know what a peer specialist is. So in explaining that, I have to disclose. How I disclose varies, but I’m usually pretty straight forward. I simply state that I have a diagnosis and describe what that looks like without burdening the person with medical jargon.

Some people have responded with curiosity and compassion. Some have flat out rejected me. In either case, I just keep things moving. There is someone for everyone. In my opinion, anyone who rejects me based on a medical diagnosis is not someone I want in my life anyway. 

recovery in action

Recovery is not a passive endeavor. It requires an act of the will. Recovery doesn’t just happen. It springs from hope, it springs from desire and it requires purposeful movement to occur.

But how? How does one put the desire to be well, to live in wellness into action? There are many paths to recovery and they all need a strategy. To move forward into wellness an individual must have a goal, a vision for their life. This goal must be to move from position A to position B. Position A is a place of dissatisfaction. We’re not comfortable in position A, like square peg in a circle groove. Position B is our vision of wellness; of wholeness. In position A we must ask ourselves what we want our lives to look like. We must ask what our day to day existence will be like when we are living in wellness. The answer to these questions become our roadmap back to the land of the living.

The answer to these questions for me always came back to my desire to work full time after living in my illness. I was dissatisfied with living as a “permanently disabled” person and wanted to move into purposeful, gainful employment. If I had based this possible shift on the circumstances of my life at that time, I would have been paralyzed by hopelessness. Not even those who loved me dearly thought it was possible. Everything in my life pointed towards spending the rest of my life depending on social security disability checks to survive.

To move from position A to position B I had to recognize that full time employment, despite its challenges, was my goal. And I needed to know why. It wasn’t enough to know that I wanted change; I needed to back it up with a justification. The answer was self-sufficiency and a sense of purpose. At my core I had always been a do-gooder and a worker bee. That was who I was, who I wanted again to be and employment was how I expressed it.

The next step in my journey was to identify what had already been done to manifest this goal. At that time, it seemed I that I had done very little, when in fact I had laid the foundation for success. That foundation was a quiet commitment I had made to myself and my son. I didn’t yet know how I was going to do this thing, but I was committed to trying. I didn’t yet know what success would look like either. I had simply planted a seed of possibility.

To move forward I needed to visualize what success in achieving this goal would look like for me. I needed to be specific too. I asked myself “how many hours a week would I work?” and “how money would I need to live comfortably?” etc. Once I had this new vision for my life, I started brainstorming specific actions I would need to do to get to my vision. These too were specific and had time frames that held me accountable. I gave myself hard deadlines and shared them with my supporters who also held me accountable for meeting those deadlines.

The next step was to figure out what I would need to complete these actions. I had to figure out what resources I would need to access and who I should enlist to help me. I was realistic though, so I also brainstormed possible barriers to success and a strategy to overcome those barriers. So, all this soul searching became my game plan for thriving in this life. It was a turn by turn map to reach my final destination of wellness. The road was not always straight or well-lit and there were many times when I feared I had lost my way. When that occurred I went back to my plan and began again.

There is no cookie cutter formula for recovery. Every journey is unique. We all don’t get there at the same pace or at the same time. But the awesome truth is, recovery is not only possible, its real. 

holding the hope

Sometimes it’s frustrating when you see potential in another person going unrealized. It’s almost like we take the other person’s lack of progress personally. So, if we can put that frustration, that impatience aside, we can actually support another’s recovery by holding the hope for them.

After all, it’s difficult to have hope when your circumstances appear bleak, when you can’t see the light at the end of the tunnel. It’s difficult to look beyond the immediate crisis when you’ve had multiple hospitalizations, when you can’t find the right combination of medications to lessen your symptoms, when your family and friends have written you off. It’s in these sorrowful moments that hope is essential in powering up one’s recovery. Hope, like faith, looks beyond the obvious towards the possibilities. It’s in these moments that hope can be hard to come by.

If you love someone who is struggling with making progress with their recovery you can help them. You can’t fix them or make their suffering magically go away. Their journey is their own. However, you can hold the hope for them. You can be a witness to their struggles and a constant reminder ---like a broken record--- that things can get better. You can highlight for them their successes no matter how small. You can encourage them to celebrate their victories when they are feeling defeated. You can enrich their lives and broaden their perspective by teaching them to honor their progress.

These small gestures have a huge impact on how a person who is in the midst of adversity views themselves. Your efforts, your compassion, your kindness will make a difference in the life of another person who is tempted, moment by moment, to give up and given in. We can support those we love who are battling with the debilitating effects of a mental health diagnosis by being a consistent voice of hope. This requires courage and selflessness on our part. We have to put aside our opinions, out tendencies to judge what we perceive as other’s lack of motivation and our own desperate fear that they won’t get better. I’m not talking about enabling another to wallow in misery or to be a martyr for those we love. I’m talking about looking objectively at your loved one and making a commitment to their survival no matter how long it takes.

How do you hold the hope for someone you care about in a practical way? Well, you start from a place of curiosity. You ask a lot of questions to find out what recovery will look like for the individual. Find out what wellness looks like for them. Be confident that they have what they need inside them to live in wellness. Help them to discover their path to recovery by asking them how life will be better when they feel better. Then plant seeds of hope by suggesting actions that could get them to where they want to go. Don’t be deterred by negative push back to your suggestions. Change isn’t easy for anyone. Just gently push back by reminding them what they said they wanted for their life.

It won’t happen quickly. You have to have patience with the process. Everyone goes through recovery at their own pace. The light doesn’t go on for everyone at the same time. And there will be setbacks. People relapse every day, but even that can be part of the process.

Being an ally to someone struggling is like being a coach. You can see possibilities for their life that they can’t yet. You know their strengths and you have confidence in their abilities. Hold on to that for them and for yourself. The rewards are beyond measure. 

transparency

People like me who live with a mental health diagnosis and go through a myriad of extraordinary experiences have a unique story to tell. Not a static biography of days gone by when recovery was just a notion, but a living, breathing, evolving account of what it means to live with a mental illness.

Those of us who choose to tell our story publicly do so for many reasons. First and foremost, I think healing is the desired result of our transparency. We heal ourselves and are the catalyst for healing for others. When we tell our story we take the painful sting out of having a diagnosis. The labels lose their power to marginalize us, to categorize us, to limit our perceptions of who we are and what we can accomplish. We come, through disclosure, to recognize that we are more than our illness.

Our openness and willingness to share our experiences with strangers gives us freedom. We experience the freedom to be our authentic selves with no limitations. Our transparency dissolves the fear of being found out. No one can “out” us because we out ourselves. No one can use our lived experience to shame or silence us.

When I tell my story to those who would listen, I am able to better put things into perspective. I realize regularly that although I’m not where I hope to be, I am far from where I was. Looking over the years at the challenges I’ve faced, I could call myself a survivor. A more accurate label though, is “thriver” because on a daily basis I choose to move beyond my psychiatric diagnosis and live a life of my choosing.

On a broader scale, transparency saves lives by fighting stigma. Stigma is deadly, it kills by discouraging individuals from seeking help for fear of how they will be perceived. No one wants to be called crazy. Transparency normalizes our experiences. By accepting our experiences as normal for us, we normalize the experiences of others and reduce the harmful effects of ignorance. When we tell our stories with courage and confidence again and again, we stomp out stigma. We do this through educating people and dispelling myths about what is means to live with a mental health diagnosis. These acts of courage empower others to open up and embrace themselves fully. When people who are struggling to come to terms with their own challenges hear our stories of hope they are emboldened and given permission to live their lives to the fullest.

The more we talk about it, the more we will understand it and better equipped to support one another. There are a couple of forums available for individuals who want to learn to tell their stories. The Georgia Mental Health Consumer Network has a program called the Respect Institute and NAMI has a program called In Our Own Voice. Both provide outstanding training and support in finding opportunities to speak in the community. Compensation for speaking engagements is also available. 

looking past the crazy

Everything isn’t always about illness. That’s what I think mental health practitioners miss. The focus is on symptoms as if they exist in a vacuum and are not a response to trauma. Sometimes looking through or past the obvious is what is necessary for healing.

What if instead of focusing on medicating a symptom like an uncommon belief or delusion, we sought out the underlying emotions or core needs? In the peer community we meet many different people with many different experiences. Perceptions are as varied as the grains of sand on a beach. I’ve met individuals who were convinced that they were great historical figures, celebrities, or government big wigs. As a peer specialist working in a clinical environment it would have been easy for me to approach them like a clinician and ask about medication compliance. I could have used psych terms like delusional to describe their experience and suggested they see a psychiatrist. But that wouldn’t have addressed what they were really struggling with.

That approach would not address the intense emotion associated with their beliefs. That approach would dismiss for example the enormous sense of responsibility for others of a person who believes they are Jesus Christ. Responding to feelings of being insignificant by asserting that one is Michael Jackson might seem illogical at first glance, but is it that much different from inflating one’s accomplishment on a resume or at a job interview? The desired result is the same, namely, to generate a sense of worth in the eyes of others. And really, who cares if a person believes they are Gandhi if that belief does not interfere with their ability to care for themselves or live a satisfying life?

So, what about when these uncommon beliefs get an individual into trouble with the law or cause interpersonal conflicts? Psych meds alone aren’t going to keep a person out of jail or mend a relationship. That’s when assisting an individual with figuring out the purpose of the uncommon belief is essential. Say my uncommon belief is that I am a prophet and am obligated to physically embrace everyone I come in contact with to demonstrate God’s love. It’s easy to see how this belief could cause me heartache and cause distress for others. One way to address this isn’t to label me delusional, but rather to address my need to show God’s love to others. An insightful peer would ask me to explore other ways of doing this such as volunteering at a soup kitchen or homeless pantry. Finding another outlet to satisfy the core need of this uncommon belief can be more effective than upping the dosage of an antipsychotic drug. Who knows how much more our lives might be enriched by the efforts of this individual.

This approach would take courage and a willingness to look beyond a diagnosis or jumble of off-putting behaviors. It would require that we refrain from judging the experiences of others from an illness perspective and just calling people crazy. This approach would demand that we spend time with individuals going through these challenging experiences and give more of ourselves in support. It’s not enough to nod condescendingly to someone expressing an uncommon belief in the hope that they will stop talking. We need to do more to assist them in working through their experiences.

staying connected

I’m really bad about staying connected to people I care about. It’s not that I’m not interested in their lives, in what’s going on with them, it just doesn’t cross my mind to call regularly. I know that sounds awful, but it is a byproduct of living with schizophrenia. The fact is, I love my friends and family deeply. I wonder about them, worry about them and pray for them daily. But I do have a hard time staying connected.

There are many reasons why this happens. I just go into a few. We all have a finite amount of energy to work with. We have to prioritize how we are going to use that energy to keep our lives moving at a steady manageable pace. Some things fall by the wayside. Sometimes, I use up my energy managing my symptoms. This is real talk. Sometimes I use up my mental and physical energy managing the noise in my head so that I can get through a work day. Many days I come home and barely have enough energy left to engage with my son. I’m like a spent battery in need of a recharge.

I always picture it like this. I have a glass full of water---- that’s my energy. I have to use the contents of my glass to fill other smaller vessels. Those vessels are work, my son, bills, self-care, and so on. Like most people I deal with what’s in front of me. Once I’ve used up my water I’m depleted. Invariably some vessels go unfilled but this is not an indication of their importance.

Then there are the rarely discussed challenges of schizophrenia like an inability to enjoy pleasurable activities and social skills deficits. The clinical world calls these “negative” symptoms like difficulty engaging in friendly conversation even when prompted to do so. These things, these tools of connectivity that most take for granted have plagued me my whole life. It’s only now that they make sense. I am now painfully aware of social cues that I have just never picked up on that have made me appear aloof or uncaring. Painful because of the missed opportunities and for the unintended messages I’ve given off. Like many others living with schizophrenia I feel very deeply, but what’s going on inside doesn’t always make its way to the surface. The result can be misunderstandings and hurt feelings.

All this being said, why not just give in and isolate myself completely? Well, we all need our relationships to stay well and thrive. We need each other’s energy to stay on track. We need each other’s varying perspectives to keep our own perspectives straight. Living in a vacuum gives way to indulging in skewed thinking and unsubstantiated fears. And the bottom line is that our friends and families do need us. We have something unique and special to contribute to their lives. They are struggling too and need our support as much as we need theirs.

Two ways that I think are easy methods of staying connected are standing appointments and weekly check-ins. A good friend of mine told me about making standing appointments. She makes lunch and dinner dates with her friends on a regular basis. This helps her keep up with her friends, fight the tendency to isolate, and stave off depressive symptoms. I came up with the weekly check in and sometimes I fall short. It takes the form of a call or text to let the people I care about know that I am thinking of them.

Final thought--- when in doubt about staying connected just call. We all, mental illness or not, get caught up in our day to day living. But it’s not all about us and our struggles. As much as we need our supporters, they need us. And I’m not saying that it’s easy to look past our own struggles, but I am saying its necessary if we want to stay connected. 

labels

People who live with a mental health diagnosis and utilize the services of psychiatrists, therapists, psychologists and the like are being done a disservice. And this disservice is dangerous. It has its roots in arrogance and cultural bias. I have experienced this disservice firsthand.

There is a myth of high and low functioning individuals with mental illness. These terms are problematic for many reasons, but mostly because they assume that everyone with a diagnosis should be the same. They assume that everyone with a diagnosis have the same challenges, coping skills, supports, etc. Basically, these terms assume that there is only one way to be mentally ill. So, individuals with bipolar disorder behave this way, people with schizophrenia behave that way and so on. This myth does not take into account the individual as a unique person with a unique set of circumstances.

Soapbox alert! People with a mental health diagnosis are as varied as people without. Our experiences are not the same. Our symptoms and our responses to our symptoms are diverse. What is debilitating and limiting for one individual is not even a consideration for another. This is why this trend of cookie cutter psychiatry fails many of us.

Over the past three years I have been able to work full time and manage things moderately well with a diagnosis of schizophrenia. There have been bumps in the road, but for the most part things have gone well. For several years following a breakdown in 2007 things didn’t go so well and prior to that I was “successful” in a great career, but always on the brink of falling apart.

What I’m getting at is cookie cutter psychiatry misdiagnosed me for almost twenty years because it labeled me high functioning. I was misdiagnosed and received inappropriate medical treatment due to the arrogance and cultural bias of my health care providers. I didn’t present as a stereotypical individual with schizophrenia. I had an advanced degree, was able to hold down a job, was articulate, well groomed, etc. The health care providers who were treating me had low expectations of individuals with mental illness and even lower expectations of people of color. I didn’t fit the stereotype of what an African American woman with schizophrenia was, so I must have been alright, right? Wrong.

This kind of psychiatry is dangerous. From this perspective, doctors and other health care providers miss symptoms, assume wellness, over/under medicate people and misdiagnose. Okay, so what are some possible remedies? Well, for one, psychiatrists in particular need to spend more time with their clients. Fifteen minutes is not enough to me to get a full picture of a person. They also need to be keenly aware of their own cultural biases. We all have them. Let’s just get real about them and check them at the door. How about also assuming that the people they are serving are experts on themselves? Another big one is taking advantage of collateral contacts. No one lives in a vacuum. Doctors need to consult family and friends when clients agree to get a well-rounded view of who they are dealing with.

High functioning, low functioning are labels that act as shortcuts for doctors who don’t want to do the footwork. We are “individuals” managing a diverse jumble of symptoms and trying to make sense of them. We deserve to be treated like the multifaceted people we are. We deserve to be in partnership with our healthcare providers without limiting labels.

leisure time

Leisure time is a fantastic recovery tool. It is the intentional act of having fun just for the sake of fun. It is essential to having balance in life. When you have a mental health diagnosis, you spend a lot of time “working” your recovery. This can get tiresome real fast. It takes a tremendous amount of energy to manage symptoms, medications, doctor appointments, etc. Add to that the non-mental health responsibilities like paying bills, keeping your home clean, family obligations, friends, work, and so on. A person can burn out real quick without an intentional plan for fun.

In my opinion, intentional recreation activities are as important as any other coping mechanism like getting enough sleep, eating right, exercising, taking meds, etc. Scheduling tome to must have fun re-energizes you. It puts your circumstances into perspective. Leisure time fives you a break from your trials and tribulations. It actually gives you the strength to manage your struggles. By taking time to take “good” care of yourself, you lower your stress level so that when things get hairy you are less likely to break down. When you have fun things planned you are motivated by them. You have something to look forward to and can see a light at the end of the tunnel.

Living with a mental illness can be draining. We spend so much time managing the devastating effects of our illness and navigating circumstances surrounding our illness that we sometimes forget about fun. Sometimes it’s like we are afraid if we let down our guard everything will fall apart. Well, everything will not fall apart-it will fall together.

Where do you begin if it’s been a while since you had fun? Start with a list of things you used to do for fun and add to it things you might like to try. If you get stuck, refer to your local newspaper for upcoming happenings, clubs, support groups, etc. Don’t stop there. Once you have your list, create a plan with deadlines to hold you accountable. Commit to at least one activity a week that will totally be about fun. Be sure to invite someone to join you, that way you are less likely to back out of it.

Be gentle with yourselves and have fun!

intentional gratitude

Life is hard. There’s no getting around this fact. It’s hard because it’s unpredictable. We can prepare for every imagined scenario and still get blindsided. We can have safeguards in place like life insurance, car insurance, a fat savings account, etc. and life can overwhelm it all in a heartbeat. So how do we keep our sanity in the midst of this unpredictability? We must live and breathe gratitude.

Speaking only for myself, I take things one moment at a time and I live in gratitude. When my thoughts start running into ‘what will I do about this of that?’ I come back to the present moment and remember what’s good in my life. The blessings of the day always overshadow the worries of tomorrow.

I do my best to live each moment in gratitude. It permeates every moment of my life and inevitably leads me to meditate of the goodness in my life--- in the world. I used to make lists in my head, sometimes on paper, of all the things I was grateful for. My imagination was key to me appreciating all the blessings that surrounded me. I would imagine for instance what my life would be like if my car broke down and I had no means to fix it. What if I fell behind on my rent and like many people had to live on the street? I would let myself briefly imagine not having enough food to eat or not having anyone to call on for help. This process put things into perspective for me. I didn’t dwell on the possibility of calamity, but I did remind myself that things can always be worse. As a matter of fact, things have been worse!

This process always leads me to prayer. In these moments it becomes imperative that my higher power knows that I am thankful for what He has provided me. Sometimes I am brought to thankful tears when I think of my early days of recovery when I could barely hold a conversation. Back then I was so overwhelmed by my symptoms that I couldn’t maintain a train of thought. And now, deep in my recovery you can’t shut me up. Things have changed dramatically and I’m grateful.

So, I encourage everyone, not just those living with a mental health diagnosis, to live in gratitude. Start small and acknowledge just one good thing a day. I guarantee that it won’t be long before you have a list a mile long of things and people you are grateful for. Gratitude will energize you and give you strength. It will give you a quiet courage to overcome your struggles. And when you share your gratitude with others, you pass on hope. 

when the meds stop working

For those of us with a mental health diagnosis who use psych meds as part of our recovery, the possibility of the meds becoming ineffective is a frightening thought. Finding the right med or combination of meds is difficult. It can be a daunting process of trial and error. For me it had gone like this, I have taken a pill or injection and had to sit back and wait to see if it has any effect on my symptoms. In addition to the waiting there is watching to see if I can tolerate the side effects.

Most meds can take up to a month or more to be effective. In the meantime I’ve endured my symptoms along with a host of reactions to the meds like nausea, vomiting, fainting, headaches, weight gain, light headedness, etc. The list goes on. And you can be sure throughout this process I am counting the days until the benefits of the meds kick in. Then by some grace I find the right cocktail of chemicals and get a bit of relief. Whew! And all the while I am trying to maintain the life I’ve created… my job, my family, my friends, etc. It’s an extremely delicate balance.

So now, life is good again. I can focus on the people I serve as a CPS, I can concentrate during work meetings, and I can be fully present with my family and friends. By the power of these chemicals and my arsenal of coping strategies, I have reached my baseline, which isn’t perfect, but certainly manageable. I’m talking about a state of being that most people take for granted.

Then like someone flipping a switch, it all goes to hell again. I can’t focus and I’m irritable with no filter to hide it. I can’t sleep or can’t get enough sleep. I’m starving all the time or have no appetite. People around me are walking on egg shells asking if I’m okay in a way that lets me know, I’m not okay.

This happened to me about seven weeks ago. My work was affected negatively. That was my first warning sign. I couldn’t get my paperwork in on time and the quality of the time I spent with the individuals I work with was dramatically diminished. I couldn’t focus on their concerns because I could barely hear them over the noise in my head.

When I tried to talk with my psychiatrist, he did what most do… he started throwing pills at me. He literally gave me a new script every time I called him. None of them provided any relief, just awful side effects. I couldn’t tolerate them, so I couldn’t take the meds. This got me a new label with my doctor, “non-compliant.” I changed doctors. Recently I found the right chemical with a different doctor. What made the difference wasn’t just the meds, it was the fact that the new doctor listened. She heard me when I said weight gain was an issue, that day time drowsiness was not an option and when I explained that cost was a consideration. She listened to me.

You know what else helped? My support system. My friends and family jumped into action and rallied around me. My friends treated me to the movies and lunch. My son put up with my moodiness and held the hope that I would feel better soon. My family made sure the rent got paid and waited patiently for me to feel better.

So it happens. The meds can fail. This is why it is so important to have a plan in place. It’s funny, when you’re well you think you will always be well. It’s hard to imagine that there may come a time when your symptoms will resurface and turn your world upside down. So when you’re feeling alright, it’s important to get your house in order. I don’t usually endorse any one product, but WRAP (Wellness Recovery Action Plan) is a great way to get prepared. It’s a living document you create in wellness to get and keep yourself well. It’s a document you can share with your supporters to keep them in the loop. They say it takes a village to raise a child, but I think it takes a village to maintain wellness. 

self-advocacy

It wasn’t until I took the training to become a peer specialist that I heard the term “self-advocacy.” Immediately it terrified me. Being an innately introverted person I had nightmarish visions of having to stand before a group of people and ask for something for myself. In more than 25 years of psychotherapy no one ever challenged me to ask for what I wanted or needed. So, I was terrified.

Terrified because right away I understood that I would have to rely on some deeply held belief that I actually “deserved” what I might be asking for. I wasn’t sure I had that belief yet. So, it became apparent to me pretty quickly that self-advocacy at its root is based on self-love and a belief that we in fact do deserve to get what we need and want to thrive in this world.

This concept is difficult to swallow for many of us who have been diagnosed with a mental illness. One has to keep in mind that from the start of our journey through the psychiatric system we have been told what we need and should want for ourselves. We have been told that a roof over our head, food in our belly and minimal symptoms is what we should be shooting for. I would venture to say that never has a person with a mental health diagnosis gone to a psychiatrist and heard the words “You are an expert on you. What do you want to try?”  From my experience and the experiences of the peers who have confided in me, this scenario just doesn’t exist. So we get used to being told what to do and what our life expectations should be.

If we are fortunate enough to be introduced to the recovery movement then our perspective has a chance to change, grow and mature. From my experience, self-advocacy is a process of getting to know ourselves, what we want and what we need to grow and thrive. It is the process of finding our voice and gathering the courage to use it to further our recovery and the recovery of our peers.

It begins with our families. It begins when we educate our loved ones about what we are dealing with and teach them how to support us in our endeavors. Self-advocacy within the context of our family lives means asserting the role we wish to and are capable of playing in our family dynamic. There is a tendency within even the most supportive families to see support as paternalism. Adults with mental illness are still adults. Therefore as adults, it’s our duty to assert what we can contribute to the family and take an active role in the health and wellness of our families.

Self-advocacy means playing an active role in our treatment with health care providers. It means being intentional in our actions. Too often we allow our doctors and therapists to come up with goals for our treatment plans that are therapeutic. These goals look great on paper and are definitely insurance billable, but have very little to do with how we are actually living. We know what works for ourselves and what we want to accomplish, so why not have that reflected in our treatment plans? I’m not saying it’s easy, but if we are not defining our goals and visions for our recovery then what in the world are we doing? What in the world are we spending our time and money on?

Self-advocacy is about social justice as well. Without fair and equitable laws that protect our rights we find ourselves in abject poverty, living in substandard housing, being abused by predators, and being disregarded by the psychiatric community. Self-advocacy means joining your voice with the voices of your peers to stop forced seclusion, ECT, and restraints in hospitals. It means demanding equal and fair treatment when seeking safe and affordable housing. Self-advocacy means using your voice to stop discrimination in employment. It means holding our institutions and our society accountable for the treatment we receive in all areas of our life. It means fighting stigma.

Not everyone is going to be at the top of their game in all areas of self-advocacy. But there is a role for us to play. We can all do our part in whatever area we choose.   

what's in a name?

Mental challenge or not, when you reach a certain age you start to wonder what your life would be like had you made different choices. At least that is the age I have reached. I wonder what my life would be like if I had said yes to marriage or chosen not to further my education or if I had chosen to stay in my hometown. As a Catholic I wonder what kind of choices I would have made if I had been raised in the church instead of taking a very winding road to Catholicism.

I wonder quite a bit about my health. What if I had known that my paternal grandmother struggled with paranoid schizophrenia like I knew my maternal great aunt had gone blind? Would I have sought out treatment when I began to hear things that others couldn’t hear? Would I have questioned my dark days as depression instead of chalking it up to being a moody cancer? Would I have denied myself the support of the clinical and peer communities for so long?

Technically, I think I’m considered to be over the hill and these are things I wonder about. There are no regrets in my wondering, just curiosity. Everything I have done up to this point has led me to this life. I love this life. I love being a peer specialist. It’s like being a teacher of sorts. I get to teach people from diverse backgrounds how to take stock of themselves to work with what they’ve got to get to where they want to be. I get to meet them wherever they are in their journey; discover with them where they want to move forward to and help them see what they already have inside them that will get them there.

It is an act of service that inspires me to move forward in my own journey. To be honest, it’s not always sunshine and lollipops though. Sometimes it’s really difficult. It’s not difficult because of the individuals I work with. They move at their own pace, at their own rhythm and get there-wherever there is for them-in their own time. It’s difficult sometimes because of the many movements occurring simultaneously.

I have my feet in so many worlds, all striving for the same thing-social justice. All of these movements want to see individuals of all walks of life get a fair shake. They want to see institutionalized “isms” eradicated and they want all people to have opportunities to live a life of their choosing. The challenge is in the language. There is no common language and the terminology we are throwing around seems to change like the seasons. It’s hard to keep up.

One group asserts that if a person is struggling with an altered perception of themselves or the world then they have a mental illness. Another group says, no, there’s no such thing as mental illness; there is only mental differences. And everyone is do touchy about how we refer to ourselves and others. Am I a peer, a patient, a person, a client, an individual, a consumer, and so on.  I have personally observed individuals from different groups who have fundamentally the same agendas walk away from discussions over a lack of a common language. It’s as if we have been traumatized by the words traditionally used to describe us and our extraordinary experiences. But what we fail to remember is that language only limits us if we allow it to. It’s a personal decision to remain within the boundaries of a label.

So, someone like me, who doesn’t care about language as long as it is coming from a place of mutual respect gets relegated to the kids table. I say let individuals decide what language works for them. I’m not offended when my psych doctor refers to me as a client or patient or consumer because that’s how he sees me. That’s not how I see myself. His language doesn’t begin to describe all that I am, all that I’ve overcome or all that I will accomplish. I really think we all just need to take a step back and get over ourselves. Why not spend that energy on what’s important, namely, the overall treatment of people struggling to get or regain control over their lives.

After all, most individuals are probably asking themselves the same questions I’m asking. “What if I had done things differently?” “What can I do now to effect change in my life?” “What do I need to do to get where I want to be?” Let’s be radical and focus on helping them find those answers instead of alienating one another with language. Let’s not get so invested in our camp that we miss the mark. How about we try to avoid the mistakes that have been made in the past by our “do-gooder” ancestors and maintain a curious mind. Let’s assume the best of one another regardless of the language we use and be about the business of empowering one another to live our best possible lives.

dear doctor...

Today I was thinking how I would approach a psychiatrist if I didn’t have a good working relationship with him or her. This is what I came up with.

Dear Psych Doctor,

It’s my understanding that you have spent many years in college learning theories about how the brain works, theories about jumbles of symptoms and the categories that encapsulate them. You are undoubtedly an expert on theories about how to lessen the symptoms of mental illness. I respect where you are coming from. I recognize that you are less concerned with how these symptoms impact the daily living for people struggling with them. As I understand things, you are more concerned with reducing the existence of these symptoms. The impact of these experiences to hour way of thinking is enter left go the therapists, social workers, peer specialists, and do on.

Sometimes I wonder though if this kind of compartmentalization of the healing process might be counter intuitive. I mean, I know how a person’s symptoms impact the quality of their life could play a significant role in how those symptoms are treated. So, for example, if I am dealing with the debilitation effects of major depression and one aspect of it is related to my obesity, then it doesn’t make a lot of sense to prescribe me an antidepressant that causes significant weight gain. Yes, hypothetically I could exercise regularly and eat well to counter the effects of the antidepressant, but how likely am I to do that if my pattern is to sleep 12+ hours a day and eat carbohydrates and sugar?

I also recognize and respect that there are times when you are tasked with complex responsibility to bring a person out of a dangerous place of crisis into a more level place of stabilization. I know that there are times when this is a matter of life a death for the people you work with. As a person who has been diagnosed with a mental illness I have been in that predicament. However, once stable how long should that level of care be maintained? At what point should people be supported in moving past crisis and back to living, back to thriving? Who should broach the subject of pulling back on the meds? When do we start the conversation about adjusting the dosage to fit the situation and address the trigger of the crisis?

Of equal importance, who is responsible for educating your clients that they have a say in their treatment? Who is responsible for teaching them how to respectfully talk with you about what they want for their lives and how what you do with them impacts their life goals. Do you tell them they have a choice of co you simply write them a script, check for medication compliance and send them on their way? Do they have time to ask questions or process what you’ve gold them of are they ushered away after 45 minutes of medical interrogation where you type their responses into an electronic chart rarely looking up at them?

What I’m getting at is, that as a client of mental health services and as a peer specialist in the mental health community I see a gap in services. This gap has to do with underutilized opportunities. In this field we can actually assist individuals in transforming their lives into something extraordinary. We work with people who have lost hope and purpose. Often they have lost choice. They are told where they can live, what they can accomplish and discouraged from living a life with purpose. 

We have the chance to empower them to live their one and only life exactly the way they want go. So I say let’s make the most of the time we spend with them. Even if it is only 15 minutes every 30 day lets beef up that 45 minutes and make it meaningful. Let’s look people in the eye. Let’s put a face to that name. Let’s identify one trait that makes each person unique so that they are more than a medical chart filled with forms, demographics, problems, etc. We are do-gooders, why not embrace that? Together we can have a great impact on the lives of the people we serve. We just have to adjust our thinking and remember that we are here for service to others. We need to remember why we got into this field in the first place, tap into the ideals that sparked the fire in us to want to help, to want to empower, to want to serve.

but you don't seem crazy!

Transparency is a double edged sword. Once a person comes out as having a mental health “challenge” or “difference” or “illness,” there is no going back. There is no hiding behind descriptions like eccentric or quirky. People will judge you and place you in a box that limits you to your diagnosis. Even if never spoken aloud, there are some who will always think “Well, you know, she’s a schizophrenic.”  So that is a very real risk we take when we acknowledge publicly our challenges with a disorder of the brain. And to be sure there is a double standard because no one ever says “Well, you know he’s a diabetic or he has irritable bowel syndrome and that’s why he thinks that way.”

People have told me that I am unique for someone with a diagnosis of mental illness. I didn’t hear this until I started going public with it. For a long time only my family and a few close friends knew. But then I decided to become a peer specialist and the cat was out of the bag. So, why am I unique? Well, clinicians have labeled me “high functioning” versus “low functioning.”  I’m not okay with those terms. They are divisive like the terms “educated Black woman” or “urbanite.” Why can’t we just be people? Maybe it’s because of the stereotypes that are perpetuated by the media, but many picture people with schizophrenia as living under bridges, poorly groomed and talking to themselves. People who live with mental illness live in a variety of circumstances. We are not the convenient two dimensional characters you see in movies and televisions shows. We are not all violent and a threat to society. We do not all need to be locked away or warehoused. We are just people.

This stereotyping doesn’t just occur outside of the peer community. There is in fact an internalized stigma within the peer community that is rarely discussed. The response I get from the peers I work with when I disclose is priceless. When I first meet them, I tell that that I am a peer specialist and the role peer specialists can play in the recovery of an individual. I tell them that I too have a diagnosis. That’s when their ears perk up and they want to know what I’ve got. When I tell them, the first thing they say is “But you don’t look crazy.” Believe it or not this is a good thing because I have just challenged their stereotype of what it means to have a mental illness. I have just challenged their image of what a person with schizophrenia should act like. I have broken down a wall. It’s doubly awesome if the person has schizophrenia too, because my disclosure plants a seed in them for what is possible.

Apparently I am also unique because I am transparent. Not everyone goes around disclosing their diagnosis. In my cultural community we have a tradition of not “claiming” adversity or in this case a diagnosis. And I don’t claim schizophrenia, but I respect and acknowledge its place in my life. After all, I’ve tried ignoring it and that got me hospitalized, jobless and almost homeless. So, now I have a healthy respect for it and give it the attention it needs so that it does not stop me from living a life of my choosing.

I just don’t feel the need to hide this part of my life from anyone. Don’t get me wrong, I don’t walk around with a t-shirt on that says look at me I’m mentally ill. However, I will disclose at the drop of a hat if necessary. What I mean is, there are times when my disclosure is not about me getting something off my chest, it’s about educating someone; it’s about fighting stigma. When I meet people in any area of my life and s sideways comment about people with mental illness comes up, I have been known to say “As a person with schizophrenia, that hasn’t been my experience.” The whole dynamic of the conversation changes from ignorant gossiping to embarrassment to meaningful dialogues. To be sure it’s awkward, its painful, its uncomfortable, but it’s necessary if we are going to change the way we think and communicate about mental illness.

This process of educating people is not new to me. It reminds me of my time in college in western New York in the late 1980’s. I went to a small state college in a small college town that was very unfriendly to African Americans. It was culture shock for me. I was naïve and thought that racism was something that happened before I was born. I learned pretty quickly that it was alive and well in the hearts and minds of my white brothers and sisters. So, I found myself having to help them unlearn some heinous untruths about me and my people. It was (and is) awkward, painful, embarrassing, and uncomfortable-but necessary for meaningful dialogue.

These dialogues about mental illness (and race) are not easy. They are not for the faint of heart. These conversations are for those of us who refuse to live in the shadows; for those of us who believe we have the right to thrive in this world just like everyone else. Don’t let the media fool you, don’t be discouraged by the way we are portrayed in the news. We really are trailblazers. Every time we get up and live our lives out loud we are destroying stereotypes and burying stigmas.  

creativity & madness

I don’t know what the relationship is between creativity and mental illness. I can only speak from my experience. What I do know is that I have been diagnosed more than once with a mental illness and I have always been very creative. Visual art and creative writing have been my refuge, my saving grace and early on the only way I knew how to communicate with my higher power. My creative endeavors have given me insight and self-awareness that no therapy has every come close to tapping into.

As a young child in the 70’s I drew big breasted women with afros, hoop earrings, bell bottom pants and a-line dresses. I drew what I knew. I drew triangular houses with chimneys and cookie cutter apple trees- though I’m not sure I had every actually seen a real apple tree. Nonetheless, I colored in brown trunks, green leaves and red circles. I made up complicated narratives that cast me as a miniature person, about the size of a mouse, in an oversized world of giants. In my world there was always at least one imaginary friend who I openly talked to incessantly.

Growing up on the eastside of Buffalo, New York on the outskirts of an area called the “fruit belt” provided me with a lot of source material. As I moved into my preteen years, I had come to be known in my family as the “sensitive” one-code word for “troubled.” But the effects of that label and the subsequent treatment were softened by the fact that I had art in my life. I had an escape. So at the age of 12 I knew this art thing was important and I knew I needed a teacher. My school art teachers had unabashedly encouraged me to find a new hobby as they had no confidence in my abilities. I found an awesome teacher in an unlikely and amazing place.

There was a unique community art school in the fruit belt called MollyOlga Neighborhood Art Classes. It was founded in 1959 by my teacher of 10 years Molly Bethel and it provided free classes in painting, drawing, photography, sculpture, clay, etc. for all ages. I met the most eclectic group of artists there of all ages and races. This was unique because Buffalo was and is still a very segregated city. E.B. was one of the painters I met there who was about ten years older than me. He was something of mystic and always had a wisdom nugget for me when we saw each other. And his laugh was contagious, he always had some silly observation for me to chew on. An extremely talented and self-directed artist he would easily have been labeled as having schizophrenia by my colleagues today.

Then there was S.R. She was multi-talented, could move so easily from painting to clay to photography and produce beautiful works of art. She literally could do it all and had incredible business savvy to boot. She was my friend and my hero. S.R. had an explosive personality and her mood could turn on a dime. She lived and loved passionately. You could be sure that if she was your friend, she was your friend for life. Several of my friends at MollyOlga struggled with extraordinary experiences like paranoia, fear, uncommon beliefs, voices, visions, vivid dreams, etc. and they were sometimes expressed through their art. Back then I didn’t have a language to describe their struggles. And if I am to tell the whole story, there was a great deal of self-medication going on through the use of alcohol and cannabis. I didn’t judge them then and I don’t judge them now. They did the best they could with what they had, but their choices took a toll on them and many are not here today.

MollyOlga was a true to life melting pot of multi-generational and racially diverse people who were beautiful, strange, talented and loving. They were ride or die friends who would give you their last if you needed it. I could not have ended up in a more nurturing environment. It was exactly where a “troubled” creative person could grow, learn and thrive. It was a safe haven, a judgment free zone akin to the atmosphere of today’s peer run wellness centers in Georgia.

Truth be told, I had some uncommon beliefs about my art. There were times growing up when I thought I had a special relationship with Vincent van Gogh. This was long before I was diagnosed, before I began to understand that I experienced things that others didn’t and before I knew that people thought that van Gogh was crazy. I just thought we were kindred spirits tortured by our deep thoughts, intense emotions, and compulsion to make art. Contemplating his challenges back then as a teenager I earnestly wished I could have lived when he lived. I was convinced that I could have comforted him and shown him another way. Even then I was thinking like a peer specialist.

Today I have a hard time describing how my mental illness has played into my art making and vice versa. I guess I just know that it has. More often than not my art making process is like a delusion that I totally buy into and act on until the realization that it isn’t real to anyone else hits me, then I stop. When I stop believing, the painting is finished and I move on to the next piece of art work. So, I often can’t explain what my paintings are about. I just don’t know or remember. I can talk to you about color and composition, about texture and line quality, even about tension and dynamic movement. However, the narrative is left up to the viewer. So, the question becomes, is this a product of a creative process or psychosis? I just don’t know and frankly, it doesn’t matter to me. What does matter is that I keep making paintings because it feeds my spirit and keeps me on balance.

  

us vs. them?

As quiet as it is kept, there is a tenuous alliance between the peer and clinical communities. I’ve observed a snarky little attitude of us versus them. This doesn’t make a lot of sense to me, a peer living on both worlds, because I believe our goals are the same. To be sure, we go about it differently, but I firmly believe our ultimate goal is to empower, engage and support the people we serve. We are both committed to service to others.

It seems there is confusion and ignorance on the part of clinicians about what peers do with the people we work with. Likewise, there is a culture of distrust of the clinical community by peers. This distrust appears to me to stem from first hand experience of peer specialists as clients of clinicians. Just about everyone I know in the peer community has a horror story about their treatment in the system by clinicians and mental health workers.

Although these accounts of mistreatment, disregard, and excessive force are in and of themselves traumatic, I don’t think they are the rule of thumb. As I have said in past posts, people who choose to assist those of us with mental health differences are “do-gooders.” They have good intentions. I know this because I spend 40 hours a week with them as a peer specialists and several hours a month with them as a client. I simply don’t believe that clinicians set out to harm or re-traumatize their clients. Although, I know that it has and still happens.

Please don’t misunderstand me, I know there have been too many instances of forced treatments, restraints, seclusion, and over medication. What I’m saying is that, as damaging as these actions have been and are, I don’t believe they are a product of malice intent. I think sometimes clinicians overreact and are zealous. From my experience and from what I have observed, I believe individually they want to help. Many times they do help.

The confusion and distrust that clinicians sometimes have for peer specialists stems from ignorance of what exactly we do. We are not babysitters. We don’t coddle other peers. We’re not even friends to the peers we work with on a professional level. We are role models of wellness and recovery. We teach, encourage and empower. We a living examples of what it means to thrive with a metal health diagnosis. We are the poster children for a life focused on wellness, not illness. This is a powerful reality because we are living breathing proof that the stigma of mental illness is based in untruths. Our existence is proof that the stereotypes are not real. We are proof that it is possible to live a life of one’s choosing and have a mental health diagnosis.

So, I think the solution to the ignorance and distrust is dialogue. We need to come together regularly and have some meaningful conversations about what we are trying to do and how we are trying to do it. And, I think this is happening on a small scale. However, there is a needs for forums that give us an opportunity to come together and compare notes. Traditional medicine and therapies work for many. I’d like to learn why and how from the horse’s mouth. Peer support works but how and why? It would be awesome if we could take the best of both worlds and combine them to support the people we are trying to assist in taking back their lives after a crisis. As it stands, peer specialist do their thing and clinicians do their thing, but there is little intentional collaboration.

In a perfect world, I envision a world where the two come together in a more deliberate manner to offer services. The sense I get is that this is happening almost accidentally, but not intentionally. This needed collaboration is not yet a part of the institutional culture of organizations.

I welcome your feedback and experiences. Weigh in on this and tell me what you think.

the power of insight

In my work as a peer specialist I talk a lot about the power of insight in recovery. Many times I have launched into an awe inspiring sermon on how great insight is because it can move your recovery forward by leaps and bounds. Then I realize by the glazed look in my client’s eyes that they have no idea what I’m talking about. It’s a challenge I’m working on-thinking that everyone sees things from my world view, is familiar with recovery lingo, and relates to their illness the same way I do.

Insight for me is about acceptance of and relationship with my illness. Coming to terms with the fact that this jumble of experiences I go through are not going away and are real was the turning point for me. To be sure, I so wanted some things to go away, but in truth, there were some experiences that were comforting. There were some experiences that were familiar and even helpful. Like the period when my voices were like wise mentors giving me sage advice about this or that. Then one day the advice went away and was replaced by a barrage of mundane conversations between people I didn’t know. It was maddening because they weren’t even talking to me.

My understanding of insight has been tied directly to my acceptance of my reality that I live with a variety of symptoms and experiences commonly encapsulated by the term schizophrenia. So even though I would never refer to myself as a schizophrenic, I do say when it comes up that I have schizophrenia. There’s a difference. One is an identity and the latter is one aspect of an identity. So, as I’ve stated in previous posts, I am more than this diagnosis. I am mother, healthcare worker, sister, artist, friend, etc.

Insight for me has also been the process of becoming more familiar with my mental illness so that it doesn’t interfere with my ability to live a life of my choosing. It has meant taking a hard look at my warning signs, my triggers, and the kinds of behaviors that I exhibit when things are not going well. I’ve had to think critically about what I alone can do to lessen the negative effects of these behaviors on my life and on my relationship with my supporters.

So how does having insight into a mental health difference further one’s recovery? Insight demystifies our experiences and takes away the painful sting of a diagnosis of mental illness. Insight reduces fear and shame by giving us permission to integrate these experiences, feelings, thoughts and behaviors into our whole being. As our insight deepens, we become for fully integrated beings. We give ourselves permission to be whole. And what are some ways we can cultivate insight in ourselves and the people we serve? There are many strategies. At their core is the state of curiosity. Being curious about who we really are, our authentic selves, and what makes us tick is essential to meaningful insight. We can use creative writing, visual art, and meditation to find out more about ourselves. We can use movement through dance or regular exercise. Then there is the art of touch through massage. We just need to be willing to try new things to figure out what works for us.

Without insight, which in my mind is the opposite of denial, it is impossible to get a handle on our mental health. I mean if we don’t acknowledge that there is something actually going on how can we address it? Acknowledging is not the same as claiming it. Acknowledging it does not mean we allow it to define us. It simply means we accept this one aspect of ourselves and give it the attention it needs. And we do this so that we can be the best version of ourselves that is possible. 

self determination

There is a lot of talk about self-determination and being self-directed in the peer community.  I don’t believe self-determination can be taught. Self-determination is the process by which and motivation to take control of one’s life. I believe it can be nurtured and encouraged by others, but ultimately it comes from within. I also believe that everyone has the capacity to develop a strong sense of self-determination under the right circumstances. Those circumstances include being surrounded by people who believe in one’s ability to direct one’s life with the strengths and talents inherent to them. Given the right opportunities for growth, everyone can develop self-determination.

On the other hand, I do believe that self-direction can be taught. Self-direction is action that comes directly from insight into one’s strengths, talents and abilities. So as a peer specialist I am tasked with the job of assisting other peers in identifying and honoring their strengths. If a peer has clear insight into what they can accomplish with the resources they have then they can direct their life in any way they choose.

In the most practical sense, I never do anything for a peer that they can do for themselves. If a peer needs literacy skills I may research agencies, but they do the foot work of calling to get information and making appointments. If a peer has a goal of going back to college or getting their GED, then I work with them to create an action plan with the steps necessary to make it happen. In the process of “making it happen” people’s self-determination is nurtured and strengthened. As they get to know what they can accomplish their confidence grows and they become more self-sufficient.

While working with people with mental health differences this nurturing can be a challenge on many fronts. Typically, people who live with schizophrenia, bipolar disorder, major depression, anxiety, etc. are told by well-meaning and genuinely concerned supporters that they can’t do much for themselves. They are often times treated like they are fragile and any challenges will send them spiraling back to the hospital. They too often are told that they can’t manage their money, make decisions, live on their own or even choose what they do in their leisure time.

Peers are told they will never work a job, have healthy satisfying family lives or really ever contribute anything worthwhile to their communities. These harmful limitations are not imposed out of malice. These determinations are made by people who care. They are made by do-gooders like social workers, doctors, day program leaders, and family members. These determinations are well intended, but inaccurate and stifling. After hearing what a person can’t do over and over again, a person will come to believe it and sadly expect everyone they come in contact with to do something for them. This may look like an attitude of entitlement, but it is not. It is learned helplessness.

To be sure, living with a mental health difference can be challenging and even limit the kinds of things we can do. For example, I know with my own mental health issues I can’t work a 50 hour a week job. I won’t work nights and weekends to get the job done. I can however, work a solid 40 hours a week and be fully present and effective during that 40 hours. Everyone, mental difference or not, has limitations. The point is, no one should be told what they can or can’t accomplish. Life is about self discovery, figuring out what is and isn’t possible. No one should stifle this process for anyone else. By the same token, no one should impose unrealistic expectations on others. People can do what they do and it’s only our love, compassion and support that will help them catapult themselves into places they never thought they could go.

Self-determination is personal. No one can tell another what direction they can or should go in. No one else can do that for us. There is no timeline either. Everyone moves at their own pace. Those of us who support peers in moving forward know all too well that sometimes we have to “hold the hope” for others. We can see the potential in them for growth, but until they see it for themselves and embrace it nothing will happen. So we hold the hope for them until they can hold it for themselves. 

extraordinary experiences

Many people live with extraordinary experiences like voices, visions and uncommon beliefs. The clinical world uses words like hallucinations and delusions to describe these experiences and to assign meaning to them. The psychiatric community assumes that the most appropriate response to these experiences is to medicate them into nonexistence and even more damaging, discount the realness of these experiences to people who live with them.

What’s the alternative? After all, who wans to go around seeing, hearing and believing things that others don’t? The alternative is compassion. For those living day to day with voices and visions they are real and have meaning beyond the label of mental illness. But how are they real? Who gets to assign meaning?

I dare to say that these experiences are real. If a person who is hearing a voice that tells them that someone is out to kill them that person becomes afraid. The fear is real. To invalidate that fear is to act without empathy and compassion. So what if no one is actually out to kill this person. The sense of helplessness, desperation, and agony are real. So why not address the trepidation instead of getting bogged down with the need to correct that person’s perceptions?

If a person believes they are Jesus Christ and is responsible for saving every living person on the planet from their sins, the sense of responsibility for others is real. Instead of confronting the person with statements that invalidate their feelings, why not address how overwhelmed they feel by their perceived responsibility? If someone has a reoccurring vision of the end of the world and believes these visions are messages from God, why not address their anxiety about the state of our world and their future?

What about meaning? Who gets to decide what these experiences mean? I say the person going through it gets to make meaning of it. So many factors need to be considered like culture, race, gender, family dynamics, ethnic traditions, etc. When I was a child I spent a lot of time with my grandmother. She helped my mother raise me and my siblings. She believed that dreams could teach the dreamer things about their life and predict future events. We had a very specific dream vocabulary in my family. My dreams have always been vivid and full of symbols. I choose to believe what my grandmother believed. I choose to take guidance from my dreams and maintain a bond with my grandmother who is now my ancestor.

I choose. What harm is there in the meaning I make of it so long as it does not interfere with me living a life of my choosing? What harm can come from the meaning I assign to it as long as I don’t impose it on others or trample on the beliefs and rights of others?

There is an organization that supports this way of thinking. It’s the Hearing Voices Network USA. I support this organization by serving on its Board and facilitating support groups. So often when people try to reach out to doctors, family members and other supporters, they are met with worry. They are usually asked if they’ve taken their meds and the assumption is that they want the experiences to go away. Hearing Voices Network USA support groups don’t make any assumptions. What you will find at these meetings is compassion and validation. Meetings are weekly for about an hour in a safe and nurturing environment. Currently there is one group in Georgia that meets every Wednesday from 5-6 pm at the Decatur Peer Support Wellness and Respite Center. Anyone who is 18 or older can attend. Contact this writer for more information.