An Interview With AS Team Member Steff Di Pardo On Her New Book
As a writer, I've always been drawn to how words can bring people together. When we tell our truth and share it with others, we change the way others experience pain. We close gaps. We create representation.
And we give a name and shape and sound to what it means to be human. I'm a big believer in the importance of building community around trauma and pain, including chronic illness, so when I found out that AnkylosingSpondylitis.net team member Steff Di Pardo recently published a book about her experience with chronic illness, I wanted to chat with her about it. She is definitely bringing people together with her words.
The book is called, "Just Breathe: Short Essays About My Life With A Chronic Illness." I spoke with Steff below about her book:
Your book, "Just Breathe" chronicles your experiences with chronic illness. Can you share a little bit about your health struggles and what finally got you writing about it?
I’ve now had ankylosing spondylitis for 3 years but diagnosed for two. I developed it at the age of 21 and had to quit my job within 2 weeks of my symptoms appearing. I was bedridden for 3 months (apart from doctor’s appointments and physiotherapy) and during that time I would post status updates on Facebook about what was going on. I had friends telling me that my posts almost brought them to tears and how good of a writer I was (I never knew I liked to write). It was those comments from friends that encouraged me to start my website and post regularly about my health journey.
The actual process of writing is something I'm super interested in. Right now, I'm completing a journal therapy certification class, and I just released a book about writing as a healing act. What do you think it is about writing that helps you on this journey — if it does? Is it about confession or normalizing or sharing with others, or something else
Writing helps me so much on this journey. It’s mostly my goal of normalizing the stigma around chronic and mental illnesses, along with connecting and sharing with others. I’ve made such great friends through my writing that I’m so thankful for. Those people that truly get anything I’m going through and will forever be part of my support system.
Do you ever feel like writing is both cathartic and difficult at the same time—because it forces you to really look at the reality of a situation? How do you emotionally prep yourself for writing?
It’s definitely both cathartic and difficult. I’ve found if I try to force myself to write, nothing will come out. I really have to be feeling the topics I’m writing about in order for something good to come out of my brain if that makes sense. It’s also difficult in the sense of looking back on the past 3 years and realizing that my life is not like the life of my family and friends. Noticing that my life has taken a different path sometimes makes it hard to get in a good headspace to write. I usually have to think about how my writing will help others in order to prepare myself to write.
In your book (and on social media) you also tackle the mental illness aspect. How does our mental health play into our physical health? What is something you've learned about yourself on this journey managing AS?
I’ve found when I’m really depressed or anxious, my pain or my fatigue get a lot worse. Mental health plays a huge part in how we feel physically. Something I’ve learned on my AS journey is that asking for help is a strength, not a weakness. It’s one of the greatest things I’ve ever done for myself and I’m so grateful that I am in therapy. It’s helped me look at my pain and my health in a different light, too.
What would you recommend for others who want to write about their illness experiences in essay or journaling form?
I would say write! Write anything and everything down. I’m a big list maker, so if you are too, make lists of how this illness has affected you. If you like journaling, find some prompts online and journal! I find writing and journaling to be a big form of self-care for me. Someone always needs to hear your story, so go out there and write!
Since you're also a writer for AS.net, I'm wondering: What is the message you'd like to ultimately impart with people who are reading this site?
I would love to tell the readers to keep going. I know this disease is hard and some days can kick our asses, but it’s important that we keep fighting. Continue advocating for yourselves, celebrate the small wins, find online communities to connect with others, and keep going. You’re stronger than you think! We’re all warriors.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?