3 Things I Learned From Becoming an Advocate for My Chronic Illnesses

I have been reflecting upon my journey and achievements through 2016. I do not achieve in the traditional definition of the word. I am presently too unwell to work or to study. I contribute by way of spreading awareness of our community, by reaching out and grasping the hands of my fellow “Spoonies” so we can navigate this corn maze of illness together.

I participate heavily in the remarkable new medium of guerrilla education that YouTube and social media has allowed us to foster. Perhaps this is one of my proudest accomplishments of the whole year. Yet, you cannot educate or champion a cause without spending the greater part of your time learning — and I have learned a lot this year.

1. Support can come from unexpected people, and sometimes the people you expected it from will be nowhere to be found.

If we are fortunate, as I am, to have close friends and family, we — or at least I — hope they will think us important enough to be there on the sidelines cheering for us during our biggest endeavors. Yet, when I began to raise my metaphorical voice and looked around, many of them were nowhere to be seen. And it hurt.

It hurt because I was using my personal and painful experiences to start a much-needed conversation, and it felt like they didn’t care. I felt my heart wobble and eventually break whenever I noticed them backing other causes through social media, often similar to my own, but not showing support for mine. I can’t say I expected that; I can’t say I accepted that. It hit hard.

It made me feel like the chronic illness I was experiencing wasn’t important to them, and by extension that I wasn’t important to them. It very nearly stopped me. But the feeling of having complete strangers, who were not obliged by connection to back me, begin discovering my videos, begin talking about them, and sharing them filled me with an amazement that eventually soothed that burn.

2. I learned that friendships were a lot deeper than I had ever been able to experience, and that I wasn’t different for feeling that way.

My father passed away when I was 11 years old in a violent, but quick car accident. Before this, his diagnoses of bipolar disorder, depression and schizoaffective disorder were poorly managed. My childhood and teenage years had been heavily consumed by multiple experiences that none of my peers had been through. These experiences and feelings occupied so much space in my young brain that I had little else left to identify with or bond with others over.

From childhood until I became a chronic illness advocate around age 22, my perception of friendship was shallow and incredibly lonely in comparison to how I experience friendship now. I’d felt as though I was interacting with people through the thick veil of my traumatic experiences.

Through the chronic illness and disability community, I was finally able to lift that veil. I was able to find and connect with beautiful people who’d had similar experiences as me. I felt as though I’d found a language with which to speak that finally made sense. I hadn’t previously had anyone with these similar experiences to compare, but now I was able to see that my feelings were completely valid and common because those around me had felt them, too.

In turn, this allowed me to finally open up with my friends outside of the illness and disability community — my mind was freed through writing, talking, and advocacy so I finally gained that room to grow and find things to bond with people over. I learned the true depth and beauty of real, three-dimensional friendships unhindered by that veil.

3. I still know next to nothing.

When I opened myself up to hear the stories of others in my community, I realized two things: the world is both better and worse than I thought it was; and that I will never know even a small percentage of all there is to know about almost anything.

I have heard stories of immense cruelty and oppression, but I have also seen great feats of strength and humanity. I learned that my education, which included private high school and, so far, a year of university, had fundamentally failed. There is so much more of the world that my social studies class, my history class, and even my health class just skipped right over like it wasn’t important when it was incredibly important. I know nothing, despite having thought I had a pretty good handle on my knowledge of the world beforehand.

I have also discovered so much about myself — talents I would never have known I had. Without advocacy and the chronic illness and disability community, I never would have pushed my will and opinions so far as to see how strong they really are. I would never have thought that I was even remotely good at education myself, and explaining things to others. I wouldn’t have heard how loud my metaphorical voice is, or seen how much stronger I am within a real community. I didn’t even know that I could sit down in front of a camera and film a YouTube video, or at my desk and write an article.

I knew nothing, and I never would have learned most of it if I hadn’t spoken up and become an advocate for my own chronic illness.

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