My Reason for Advocating (and Journaling Prompts To Find Yours)

Many of us are Social Health Network advocates here. We advocate for people that suffer from illnesses that we may or may not also suffer from. Sometimes we are patients, other times we are caregivers. Advocacy may look different or similar for each of us.

Regardless of the differences in how we advocate or how we got here, we are generally here for the same reason - to make some sort of change.

For me, my own reasons for advocating have come to me in my darkest times. When facing discrimination due to my disability, for example. This past week I had a meeting with my mental health case manager discussing my needs for the immediate future.

She had a plethora of questions about why I am unable to work a real job with severe type 1 narcolepsy, almost pressuring me and definitely undermining the severity of my condition by doing so. Once I was able to explain to her, with a great deal of effort and difficulty, the ways in which my disability limited me, she seemed to get the picture.

“So when are you expected to get better?”

More explaining on my part, more effort. I explained that narcolepsy is a permanent neurological condition with limited medications and pharmaceutical therapies available for its treatment. And those treatments often are not adequate for returning to “life as normal” for most of us.

This meeting was supposed to be about my mental health needs, and I spent the majority  of the time having to justify my physical disability.

She later apologized.

“Sorry,” she said, “I just don’t know much about narcolepsy.” She is a mental health worker, with limited knowledge on a neurological condition that affects 1 in 2,000 people.

People doubt me, discriminate against me, and don't understand

I am used to explaining to people about my condition, and unfortunately I am used to them being doubtful of its breadth and severity, and even whether or not it is an actual disease that I suffer from. Even when it comes to medical professionals, I often face doubt and discrimination. I know that I am not alone in this.

After this conversation, I realized that this exact situation is one that I face so often - and is why I am so determined to advocate for people with narcolepsy.

Your reason for advocating can be illuminated by situations such as these. Finding your reason for advocating can also be done through journaling exercises.

Journaling prompts for finding your "why"

• What are some common struggles that your community faces?
• What do you want for your community instead?
• What is your call to action?
• If you could make one change in how your people are treated or viewed, what would it be?
• How can you and others in your community help create that change?
• What are some of your general values? (Some of mine, for example, are justice, fairness, empathy, and community connection) 
• How can you utilize these values to better align your efforts in creating positive change for your community?