Make sure to check out Part 1 of our interview with Dan Pezzetta, an advocate for the rare disease and chronic illness communities. In Part 1, we dug into Dan’s experience with chronic illness, what aortic stenosis was, and how he got involved in POP! Today, we are discussing his book – “Disposed: A Story of Chronic Illness During the COVID-19 Pandemic” – and advice for you on how to best advocate for yourself. 

Conceptualizing “Disposed: A Story of Chronic Illness”

Part of working towards this healing is acknowledging some of the gaslighting and ableism inherent in the pandemic and society’s response to the pandemic. For example, Dan shares, the pandemic opened up a much more ableistic discussion on life or death – who “deserves” to live? He explains that some people may just be unaware that conversations like “well, some people will just die” and “herd immunity” are targeted – even eugenics-esque. Dan says:

It has been incredibly difficult, dehumanizing, and demeaning to hear things like “people who are sick can just stay inside” or “only the sick and elderly are dying.” These statements are meant to be comforting, but those are terrifying prospects for me and many other people.

One of the issues with addressing these statements, however, is the fact that society has a more ableist perspective. Dan shares:

Many people may not have even realized that what they were saying was harmful. Disabled people have historically been left out of conversations, but we deserve to be recognized as humans. We are not doing things in spite of our conditions. Our identity as disabled is not our only defining factor. It’s part of who we are, but it isn’t who we are. People only see the condition and it can be easy to write that off and reject the need for accommodations. But we need to stop generalizing people through this very individualistic lens.

This desire to change the narrative helped shape Dan’s decision to write “Disposed: A Story of Chronic Illness During the COVID-19 Pandemic.” Initially, Dan felt stuck and alone during the pandemic. He felt discomforted by widespread ableist views. But after he began talking to people of all backgrounds within the chronic illness and rare disease communities, he realized that everyone had a collective hurt.

Writing the Book

A GWU admissions counselor jokingly said that they would read Dan’s story when he shared it to her when she inquired about his life during the pandemic. When Dan spoke to his coworker, who is a writer, the coworker also jumped in to help, stating that they would actually proofread a book if Dan wrote the first ten pages. So Dan began writing – and has now used his voice to not only mobilize the rare disease community, but to show healthy individuals a new perspective and change their line of thinking.

Dan says:

Many people want to pretend that the pandemic is over, but there are many people in our community who are still at risk. Returning to a “normal life” is not the answer when we have sick people who have rights and concerns who are still at risk. People with chronic illnesses and rare diseases are not disposable. At the end of the day, able-bodied individuals do not have our lived experiences. It can be upsetting and painful to hear. So through my book, I want to remind our community that we are such a powerful force. If everyone in the rare disease community formed a country, it would be the third largest in the world. Others don’t seem to properly quantify it, but I believe that by starting these conversations, we can make a world where people accept disability – and do not stigmatize it.

This is also particularly important as there are many people coming out of the pandemic with new illnesses or other conditions. For example, those with “long COVID” have faced months worth of symptoms; others who have been infected are now facing brain fog, chronic pain, and other issues. While this is hard to adjust to, Dan wants to ensure that they know he – and the rest of the rare disease and chronic illness community – will be there for support.

Advocacy and Advice

In the end, Dan really hopes that he can not only represent this community, but inspire others to step up and take on some advocacy. Dan himself was inspired by Emily Parks, Seth Rotberg, and other members of the community who are ensuring that their voice that can be so easily forgotten is never silenced and always heard.

For those who want to get involved with advocacy but are unsure how to start, Dan shares:

To get involved, just speak. Advocacy doesn’t have to be on a grand scale. It can be in front of your doctor, saying you won’t take no for an answer, or to your family, telling them how you feel. Your own self-advocacy is just as important as legislation. That’s something that I learned as well – it doesn’t have to be on a national scale. I just need to make sure people know who I am and that I am willing to stand up for myself.

There are also going to be days, moving forward, where you may not have the emotional, mental, or physical energy to be an advocate. And that’s okay! Dan reminds those within this community that if you’re hurting, or angry, or just need a break, it is okay to take some rest and do what is best for you:

You don’t have to justify your existence. I know we always hear that you’re supposed to do XYZ and that is the blueprint for living successfully, but you need to prioritize yourself. Be confident in who you are and what you need. Then, when you have the capability, you can share your experience and share who you are. And that will be a beautiful thing.