Interview With Writer and Artist Bára Hladík

Editor's note: I truly love sharing stories from people who live with ankylosing spondylitis; from the newly diagnosed, to the young, old, people of all genders, with all different experiences. I was so happy that I was gifted the opportunity to interview Bára Hladík, a Czech-Canadian writer and multimedia artist living with AS. We talk about chronic illness, her diagnosis journey, growing up with herbal medicine, and writing as a way of coping in the interview below. You can read more about her here, pre-order her book here, and follow her on Instagram at @ba.r.a.

AS.net: Firstly, could you share a little bit about yourself, your background, or anything else you'd like our readers to know about you?

Bára: My name is Bára Hladík. I was born in Ktunaxa Territory in rural Canada shortly after my parents fled Soviet occupied Czechoslovakia. I am a writer, artist and aspiring health practitioner. I am a Capricorn Sun, Pisces moon and I love plants and music and good short stories.

When did you first start experiencing AS symptoms, and what were they? When were you diagnosed?

I started experiencing symptoms when I was 14 or 15, but didn’t really know what was going on. I remember I was struggling to sit on my chair in grade nine math class from back pain and would kneel at my desk. I also had strange immune symptoms and had chronic strep throat.

I really started to realize things were serious when I would struggle to walk for a couple days after exercise around the age of 18...but I mostly ignored it and tried to keep going. When I was 19 I moved to a city to access better healthcare and education, but it took me years of going to doctors to have anyone take me seriously. I was told I was a “healthy young woman with depression.”

After several specialists denying me testing, a rheumatologist finally agreed to give me an MRI. Instantly, my prognosis went from mental illness to severe degenerative spinal disease that could land me in a wheelchair in the next ten years. I was 24.

How have your symptoms changed over time?

The onset of my symptoms was gradual and episodic. I was in a push-crash cycle for several years, and my crash periods were getting longer. At times I would have to recover for six days after an afternoon of errands. After getting on biologics, my immune system struggled to fight off colds and infections, so this often depleted my reserves.

But now that I have been on them for six years and found the right dose and drug, as well as other treatments like acupuncture, herbs, qi gong and radium therapy, I’ve improved. I have more energy, and am more mobile. I still have severe pain most days, but it has decreased to be much more manageable.

What has your AS treatment journey been like? When did you start including holistic/herbal medicines into your practice?

I grew up with herbal medicine. My family has a lot of herbal practices that are passed down, and my mom did a lot of these for me growing up as I fought episodic strep throat for several years. When I was 19 I started growing my own herbs and making tinctures. Herbs have definitely been incredible on my digestion and help me manage my inflammatory responses.

In 2018, I went to radium therapy in the Czech Republic. There are traditional medical spas that treat a variety of conditions and I went to one that specialized in AS. For 21 days, I soaked in radium-rich water emitted from deep wells. I also did several other therapies such as magneto therapy, hydrotherapy, laser therapy and physio. The treatment was incredibly successful and gave me a boost in my energy and less pain that made me able to hold down a job again. In Czech, a month of radium treatment is covered for AS patients every year as it is so successful.

In the last couple years I have been studying acupuncture and herbology, which has given me access to regular affordable treatment. This has significantly reduced my pain and fatigue, improved my digestion and increased my mobility. I have found that working with integrated medicine methods has been really positive on both my physical and mental health, as the prognosis in Chinese medicine is less pessimistic that the western paradigm, and I have found a lot more room for care, growth and tangible healing.

How do you care for yourself when you're flaring, having pain, or any other symptom?

Over the years I’ve learned a lot of different strategies. The classics: heat pad, muscle relaxant creams, gentle movement, resting, magnesium baths, self-massage, going for a slow meditative walk if I am able. The hardest part is often allowing myself the time to care for myself. When I finally surrender, I do a lot of dreaming, reflecting, writing, and reading. These ways to fill my emotional and spiritual selves is really important for me to be able to sink into my body with acceptance and stop fighting the pain. Once I have come to a form of acceptance, I am much more equipped to tune in and care for my body.

Is writing a part of your care practice, or is creativity independent of your AS? Or does it sort of go hand-in-hand?

Writing is definitely a care practice for me. Dreaming of stories or poems allows me to take a mental break from my issues, and dream beyond my limitations. It allows me to find a sense of transformation when I feel completely stuck. It is a companion for me in times of isolation, and it connects me to a larger community through space and time.

Do you have advice for anyone struggling with their diagnosis or symptoms currently?

Have a lot of compassion for yourself. Forgive yourself. Allow yourself to grieve and rejoice. Honor your selfhood and boundaries. Allow yourself to stop doing what doesn’t serve your healing. Do whatever you need to do to get yourself in a situation that allows you to heal and grow. Accept that your healing arc may be longer than you feel ok with, but that healing is possible. Find where you see beauty and relief and follow it. Transformation is always possible.