Advocacy is power

mother and daughter embracingMy mom was in her mid 30’s when she was first diagnosed with major depression. I remember coming home from school, hoping to see Super Mom, but instead I found her lying on the couch, fast asleep every day. I was young, and I didn’t understand why she couldn’t just snap out of it. “What is there to be this sad about?” I thought. It wasn’t until I fell into my very own bout of depression that I understood.

When I was fourteen, I was diagnosed with bipolar disorder with schizotypal features. I, too, began to sleep all day, and my friends wondered why I couldn’t just snap out of it. While I slowly dissolved into the living room couch, my parents fretted over my future, and it was the first time in years that my mother showed any sign of concern, or interest for that matter. Because I was so depressed, I wondered why she even bothered to try.

My parents started to educate themselves on my diagnoses. They learned how to navigate the system and advocate for my needs and best interests. They met other parents who were going through similar things. Eventually, they got me to go to a youth group and an alternative high school that helped me come out of my shell. I was making friends, using coping skills, and learning to advocate not only for myself, but also for better services for youth within the mental health system.

I felt strong again. I was speaking up at my own IEP meetings, making well-informed decisions and partnering with my parents rather than sitting on the sidelines and letting them do all the work. We made a great team. Even my transition from teen to adult was relatively smooth considering my mental health needs. It seemed like I was going to ride off into the sunset a happy camper.

This is my story. Many people have heard it — but I never delve into what happened after the happy ending. A few months shy of my turning 19, my mother’s depression came back with a vengeance. She took to lying in bed for days on end. This time it was different — it was worse than the first time around, and I was older and experienced enough to understand what she was going through. My father and I tried to rally the way they had for me, but she didn’t respond to our efforts. We felt hopeless because she had essentially given up.

In 2011, my father died and I became my mother’s caretaker at the age of 23. Despite becoming miraculously resilient against my depression and anxiety, I was still quite young for my age. I barely knew how to be an adult, let alone take care of one. On top of my mom’s mental health needs, she had mounting physical ailments as well, and I was losing my mind trying to figure out how to care for her. I had no car, limited funds and almost no support. When it felt like all hope was lost and I was going to drown, I remembered that I indeed knew how to swim.

While I did not know how to balance a check book, drive a car, or set up my mother’s oxygen tank, I did know how to advocate. I called doctors on her behalf and got them to give her the care she needed. I helped get her set up with adult DMH services so she could receive adequate supports. I helped her get into a program that helped her with independent living. My voice and determination helped my mother live again.

Today my mother is doing well. She lives on her own with minimal support — but she knows that her team is only a phone call away should she need them. She is re-learning to advocate for herself with my help, the way she taught me when I was young, and while I’m still learning the ways of adulthood, I’m using my skills to make the best of every day. I guess, as it turns out, learning to advocate all those years ago ultimately became my biggest asset.

Chandra Watts is our guest blogger.  She is a young adult who draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

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6 thoughts on “Advocacy is power

  1. I am so impressed by your courage and persistence to not only learn to cope with your own illness, but to help your mother in her recovery. There’s a lot of love in you and your mother – such a gift.

  2. Chandra, what a great story. Reading how you were able to help your mother by using the skills your parents modeled for you brought tears to my eyes. As long as you know how to advocate, wow, the rest of it, well, can’t say it doesn’t matter but driving a car etc kinda fades into the background huh?

    Thanks!
    -ska

  3. Chandra, Duane would be so proud of the strong, determined, young woman you have become. You are inspirational!!! I hope you know that 🙂

  4. Chandra – What a beautiful story and what a great daughter and person you are! Your father is smiling down at you. It’s an honor to know you and to work with you

  5. I, too suffer from bipolar disorder, mine has a lovely side order of psychosis. I greatly admire what you did for your mother, and I also cherish your compassion and understanding for her. Your story is inspiring and very touching. Advocating for ourselves is the most powerful thing we can do to help ourselves. Thanks for sharing your story.

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