recovery is real

Recovery from mental illness is a very personal thing. It means different things to different people. For me it meant getting off of disability and working full time. It meant getting to the point where I could manage my symptoms well enough to do some kind of meaningful work and be independent again. It meant being fully present for my son.

For some it means the ability to get out of bed in the morning and have some sense of purpose. For others it means quieting the voices in their head long enough to have a conversation. Ultimately recovery is a process, the getting from one place to another.

Recovery is rethinking one’s life to include the realities of mental illness. It’s getting from the question of what’s wrong to what’s strong. Recovery is reclaiming one’s life. It’s finding a way to be the best version of oneself in spite of the debilitating effects of mental illness.

In my darkest days I slept 12 sometimes 14 hours per day. I would go days without bathing and ate all the time. I ate for comfort and to numb my emotions. In 2007 I broke down. I didn’t understand what was happening, but my symptoms were out of control. I was hearing distressing voices, crying all the time, not sleeping much or sleeping too much and eating everything I could get my hands on.

One day I went out for lunch at my job and knew I was never going back. I sat in my car fighting back tears of utter defeat. I had no idea what was wrong, but I knew I couldn’t go on like I had been. After 10 months of borrowing money from my brother and sister to take care of myself and my young son I moved to Atlanta to be closer to family. I remember crying on the phone with my sister saying “it’s all falling apart.” To her credit she calmly encouraged me to let things fall apart.

When I complained that I didn’t have the money to move she countered with” I’ll pay for it.” She knew I was sinking, but she wasn’t going to let me drown. A friend helped me pack the 24 foot U-Haul truck and I drove from south Florida to Georgia with my son beside me and our cats Luvy and Duvy in the back.

Again, my sister was there for me. She set me up in one of her rental houses and let me catch my breath. I got into a routine fast that centered around making my son’s life as normal as I could. It was very hard on him. I had just uprooted him from the only home and friends he had known for five years. I yanked him out of his fifth grade year in the middle of the year and dropped him into an abyss. I never slept when he was awake. When he was awake I kept my voices and tears at bay. I played with him, helped him with his homework, watched TV with him and basically tried to reassure him that everything was okay.

In 2009 my therapist told me about this thing called a peer center where I would find support with living with a mental illness. I went to the Decatur Peer Support and Wellness Center with no expectations. I asked the staff if they had an art class, they said no and then the director asked me if I wanted to teach one. I thought about it for a whole five seconds and said yes. For nine months I facilitated an art class. It was great. It gave me the confidence to apply for another part time job at a local music nonprofit. I did that for a year then went back to the center and applied for a job as a peer specialist. I was hired and my recovery really began full steam.

Just being around people in recovery was good for me. Having my experiences validated and not feeling the pressure to be happy and well all the time allowed me to feel free. Everyone around me had a diagnoses, but that didn’t stop them from doing their job. Nine months into the job, my supervisor sent me to get my certification. I was energized and transformed by being around so many recovery centered people. I was inspired by being in such good company. These were my peers and they were living a life of their choosing. The first night of the certification training I texted my supervisor and told her I wanted to work full time.  There were no full time positions at the center and three months later I was working full time at another agency.

So how does one get from there to here? Simply put, one fights. One fights every day, sometimes every minute to live a life of one’s choosing. No one, not me, not my therapists, doctors or family thought I would ever work full time again. I was convinced that my life would be a never ending battle of scraping and scratching to get by on disability. I was convinced that my illness was who I was and would decide whether or not I could live with purpose. Then someone said to me what I needed to hear…” you are more than your diagnosis and your lived experience with mental illness has value.”

Recovery from severe and persistent mental illness is real.

psych meds...the not so skinny

Psychiatric medications can do wonders to help people manage the symptoms of severe and persistent mental illness. I have been taking psych meds for nearly 25 years and the experience has been both a blessing and a curse.

The struggle stems from the myriad of debilitating side effects and the exorbitant cost. From my personal experience psychiatrists have a one track mind. They appear to only be interested in resolving my psychiatric symptoms… as they should be. However, they don’t place any emphasis on the side effects of the medication. While taking an antipsychotic once, I began gaining unbelievable amounts of weight. I must have gained 80 pounds in less than a year. My doctor at the time asked what I wanted most, to be sane or to be skinny.

In his mind it was an either or scenario. He didn’t take into account all the damage to my physical health that the weight was causing. He didn’t appear to be concerned about the pain in my joints, the sleep apnea, high blood pressure or prediabetes. He only appeared to care that my voices were manageable. That taken care of, his job was done.

My general practitioner on the other hand was livid. How could I let things get so bad? Didn’t I care about my health? Didn’t I know that people with mental health challenges die on average 25 years earlier than those without? And when I explained that I was struggling to maintain my sanity with highly potent meds, she didn’t believe me. She didn’t believe that the meds I was taking could have the effect on my physical health that they did. She blamed my ills on my lack of discipline and inability to regulate my eating habits.

Is it any wonder that people who really need psych meds often go off them?

Other troubling side effects include hair loss, foggy thinking, slurred speech, excessive salivation (drooling), stiff muscles, drowsiness, erratic uncontrollable movements, nausea, headache, insomnia, constipation, dry mouth, dizziness, light headedness, high blood sugar, hypertension, seizures, death, and on and on. Again, I ask, is it any wonder that people who really need psych meds go off them?

Then, there is the cost. First let me just stress that everyone with a psychiatric disorder does not have health insurance. And even with health insurance there is no guarantee that you can get the meds that work best for you. From my experience, the most effective meds with the least amount of side effects are the most expensive. I once came across a med that worked brilliantly. Very mild side effects, totally squashed my psychosis, and easy to take. A thirty day supply was $1500. It took me two months of letter writing to my insurance company and two months of a less effective medication to get them to pay for it.

For many, psych meds are a way of life. They can be transformative and make it possible for people living mental illness to live the life they want to live. However, users of psych meds can pay a high price for their sanity. It is a delicate balancing act between managing one’s illness and the sometimes debilitating side effects and comorbidities. 

There’s no easy solution, but a step in the right direction could be better communication between behavioral health clinicians and medical doctors. A collaborative effort between these individuals coupled with greater self-advocacy by peers could make all the difference.

disclosure

Disclosure is a big deal for people living with severe and persistent mental illness. The question becomes not only who do I tell, but when and how much. For me disclosure is on a need to know basis. In my line of work, however, it is almost impossible to conceal it. Certified Peer Specialists are required to have personal experience with mental illness and we use that lived experience of recovery to support others on their journey to recovery. Our experience with living with a mental illness gives unparalleled legitimacy to our belief that everyone has the capacity to live, learn and grow.

The greatest challenge in disclosing is that there’s almost no way of really knowing how someone will respond. Will they be tolerant, compassionate, politically correct, frightened or simply turned off? You just don’t know until you do know.

As much as I have been rejected after my disclosure, I have been embraced. I’ve experienced many different kinds of responses.

Early on when I told some of the members of my extended family, I was told that mental illness was a myth; a construct of the pharmaceutical  industry to ensure reliance on medication for the purposes of big profit. All I could think in reply was tell that to my voices! Other family members asked me repeatedly if I was sure, didn’t I want to get a second opinion? One family member, my sister, said what I needed to hear most. She said, “Okay, how are you going to manage this? What can I do to help?” She continues to this day to be a blessing to me.

When I talked with my son about it, his response was that it’s just a label. Another awesome response I got was from a former employer. She hired me for my first CPS job and said “Come to work anyway.” This is what she said to me when I expressed concern about being symptomatic. “Come to work anyway.” That meant I didn’t have to put on a happy face and pretend that everything was okay. All I had to do was show up and do my best. That freed me and I have taken that philosophy with me. All anyone can be expected to do is show up and do their best.

I’ve also had some awful responses. I once had another CPS tell me that he could not be friends with me because I have a mental illness. Yes, you read that right. Another person with a mental health challenge rejected me for having a mental health challenge. I had another person come to my home, break bread with me and my friends only to stop taking my calls when he found out about my illness.

This would never happens if I disclosed I had irritable bowel syndrome or diabetes or eczema. Never in the history of mankind has someone been rejected for having a heart murmur. My point is, these are all medical conditions. These are all physical issues. Well, so is mental illness. The brain is an organ just like any other and it can get sick like any other. So why do we as a society fear this sickness over others? Why is it that for some people mental illness is a deal breaker? It can be managed like other illnesses. It can go into remission. People can and do recover.

Manifestations

I have often been asked what it is like to hear voices. It’s not an easy thing to describe because it isn’t a singular experience like bowling. Bowling is a singular event. It’s a ball and pins and the effort you put into knocking those pins down with the ball. The people you bowl with might change, what you get from the concession stand might change, but the act of bowling never changes.

Having voices is like having a life within a life that only you are privy to. It’s not just someone talking, well it can be like that, but it’s deeper than that… richer than that. It’s someone with a distinct personality sometimes. Someone with definite opinions and a specific outlook on your life.

The voices gave me advice; go there or don’t go there they would warn. Trust this person or stay away from that person they would coach. Go down this road, apply for that job, and on and on. There was a time when I felt comforted by them. But they also condemned me. They would sometimes tell me that I should be dead and that I was worthless. In those times I used positive self-talk to combat the effects of the negative messages. I would challenge the voices with reason. I would talk back with life affirming declarations. And to my surprise it worked. The voices would fade for a time.

Sometimes they did not even talk to me, they talked with each other. There were times when they were oblivious to me. In those moments it was like having the TV on at its highest volume in another room. I could hear snippets of the broadcast, but not the whole thing. There’s also the music. A song would play in my head incessantly. But not the whole song, just a series of lyrics. It’s not like getting a jingle stuck in your head where eventually you get distracted and it goes away. This music plays behind your dreams and blares like a trumpet when you open your eyes in the morning.

So while all this is going on I still have to go to work, I still have to be mother to my son and I still have to respond to the life outside of my head. Medication helps and distraction and sometimes just telling the noise to be quiet helps. But some manifestation of the noise is always present.

Now I help others manage their manifestations. That’s not all I do as a Certified Peer Specialist, but it’s one of the things I do that is most gratifying. I get to see someone who feels ruled by their voices learn to manage them and actually thrive with them.

Some people respond well to medication and some don’t. I take meds and they take the edge off, but the voices are never far from me. Even with the meds a stressful situation can override their effect on my voices. So, I’ve stopped trying to get rid of them. They are a part of me. They help make me who I am and of equal importance they make it possible for me to help others faced with the same challenge. 

new beginnings

I could probably go my entire life without writing a blog, but then my story would never be told. We all have a story and just like you my story is filled with ups and downs, twists and turns, good and bad. My story includes dark valleys and triumphant mountains. If you’re reading this, your story includes the same because you’re here. Despite the roadblocks, you’re still here.

So, my blog will delve into the experience of living with a mental illness, of being more than a survivor but rather a thriver. Yes, I am thriving with a mental illness. I run races, I’ve raised an awesome talented son, and I work full time in the mental health field as a Certified Peer Specialist. However, every day I live with the symptoms of psychosis. My diagnosis? Well, that’s complicated. Over years I’ve been told I have bipolar disorder, schizophrenia and schizoaffective disorder. It seems that what I have depends on which doctor you ask. What I know for certain is that I live with voices, mood swings, depression and mania.  I am more than my diagnosis. My identity includes being a daughter, sister, artist, mother, writer and professional helper.

My journey has been a process of becoming the best version of myself possible. I hope you will come along with me as I recount some of my highs and some of my lows; as I continue on this path to living a life of my choosing. After all, that’s what we all aspire to; a life lived on our own terms.