In the last twenty years, off and on, with my frenemies, Anxiety & Depression, I have learned quite a bit about living a life with Mental Illness. My first twelve years were in secret, keeping my mouth shut on anything relating to the words melancholy, empty, sad. I was told to hide, told that the stigma would ruin any chance of a career for me, would isolate me and make me feel even more lonely than I already did. I was ashamed that my differences made me plague-worthy. Who wants to be friends with a psycho?!
Eventually, I got fed up… or I should say, extremely deeply depressed. I couldn’t hide it anymore. My Postpartum Depression and Anxiety brought on my first step in becoming free of this stigma… I had to admit my illnesses to someone aside from my family. I had to tell my boss. I had no idea what would happen, if I would be let go for some stupid made up reason to hide the real dismissal of me being crazy. I had no other option though, I was hospitalized and in turn could not do the work I took home to do during my maternity leave.
I then started to tell some friends and upon seeing their genuine compassionate reactions, I realized not everyone believed the stigma behind having a Mental Illness diagnosis. It was from this point, about a decade ago, when I decided to screw the stigma and advocate.
Advocacy is defined as, “the act of pleading for, supporting, or recommending,” by dictonary.com. I dove right in, starting with Mental Illnesses that most were unaware existed, Postpartum Depression and Anxiety. I immersed myself joining up with a non-profit I found on Facebook one day. I bonded with fellow mothers who experienced similar events. Some of them proudly declared their stories while others still felt the need to hide. It was an amazing feeling to not feel alone.
By doing this I began to tell my story to anyone at any given moment. It didn’t matter if they never inquired about my illnesses. I wanted to get my story out there. I wanted to be a voice, a voice that was heard when many others were still so afraid to speak up. This was my main form of Advocacy. I told my stories and frankly couldn’t care less if someone responded negatively which was very rare. I rose up to the challenge of becoming a symbol of someone who could be successful and who lived with Mental Illnesses.
These last few years, I began to learn about Self Advocacy, the need to fight for my own care. This is not always easy to do especially when your own care involves a brain imbalance and what I like to call “thinking imperfections”. In the beginning, I even wondered who would trust me to create my own care plan… after all, that required someone with a healthy brain, not someone who was mentally ill. Now I don’t care. Majority of the time, I am in my right mind and can decide things for myself. But this was not always the case.
Three years ago, things changed. I quickly went from a stable human being to one having a psychotic break. There was no point in creating a Self-Advocacy plan at that time because the change was so rapid I could barely recognize it. One moment I could coherently tell my husband I needed to go to the hospital’s inpatient psychiatric unit, the next, I was in the fetal position scratching my head repeatedly crying for the rapid thoughts to leave me, that it hurt too much. It frightened my husband, my parents and my daughter who was 8 at the time. More importantly, in my lucid moments, it scared the shit out of me.
It was after this last episode with Major Depressive Disorder that I became extremely involved in Self-Advocacy. I needed to be. I knew how my body felt, what my brain was telling me, how the meds were working. When I needed a different type of therapy, I searched for the therapist. I worked together with my psychiatrist at the time in weaning off two of my medications. I made sure my doctors and my therapist were aware of each other. I began to practice Mindfulness and really took notice at how my body felt. There were no secrets anymore, no hiding.
And now, once again, I am advocating for myself. In the last 2 years 9 months, I have been through 4 psychiatrists/APRN’s at the same psychiatric group. They all left for some reason. The first, who saw me through my worst, left to have a baby and never came back. The second I saw once and then he retired. The third who aided me in my weaning and worked with me on medication changes left to become a head for an addiction facility. The last… I saw her once in July, just sent a letter explaining that she returned to work far too early when she had her first child and was now pregnant with her second. She decided to leave the end of the December. I was due to see her in January.
What to do, what to do? As I am waiting for my next assignment, whether it be a psychiatrist or psychiatric APRN, I am researching my other options because well, starting a 5th doctor in 3 years is kind of annoying. With my track record, the 5th is bound to up and leave too. There must be other psychiatric groups out there. Sad thing is, I am only down to seeing them twice a year just for prescriptions. I know for emergency purposes, my primary care physician would write a script for me. Problem is, my Anxiety has been worse these last couple of months and I foresee an additional medication being prescribed. As much as I like my PCP, I need someone who specializes in Psychiatry.
Self-Advocacy is a process that can be very time consuming and mentally and physically draining. When it comes down to it though, it needs to rank high in the self-care process. The only person who is going to care as much about your care and health, is you. What I have realized is that having a Self-Advocacy Care Plan is also a necessity. This can be used when you know you are not mentally stable. It is a list of things for your spouse, parents, or even a special friend to tell the doctors when you can’t. It allows them to advocate for you the way you would want to advocate for yourself.
I am currently putting mine together.
S. Paige Writes: 