“I used to think I was the strangest person in the world but then I thought there are so many people in the world, there must be someone just like me who feels bizarre and flawed in the same ways I do. I would imagine her, and imagine that she must be out there thinking of me, too. Well, I hope that if you are out there and read this and know that, yes, it’s true I’m here, and I’m just as strange as you.” – Frida Kahlo
Communicating the pain experience in a way that can be understood easily by others, especially clinicians and caregivers, is the most important step in getting good pain care. Yet, for many people with pain, especially for the very young, communicating pain can be extremely difficult. Over the years, I’ve learned to express, and literally, illustrate, my pain effectively through art. This ability has strengthened and empowered me, and, ultimately, it’s led to the pain care I’ve needed. So, here’s my story about the challenges I had to overcome and the woman who helped me do this.
When I was 13 years old, I was diagnosed with Ehlers-Danlos Syndrome (EDS)—a painful genetic connective tissue disorder that is still not well understood by healthcare professionals. Although, on one hand, it was helpful to have a label that explained my clumsiness, bruising, pain, fatigue, and other symptoms, on the other hand, there were things that were difficult for me to comprehend—things that needed more explanation, and things that required treatments I didn’t really understand. And, all this came at a time in my life when being “normal” and fitting-in were of utmost importance to me. The last thing I wanted to do was call attention to the invisible, not-so-normal pain that was occurring in various parts of my body.
Shortly after receiving the EDS diagnosis, I was given an anatomy book to help me to be more specific about describing my pain. It wasn’t much of a problem pointing where it hurt, but it was challenging communicating how much it hurt or articulating what the pain sensations felt like. I didn’t have the life experience or language skills to effectively describe the pain to my parents or healthcare providers. As a result, I felt frustrated and lost and my solution was to hide my pain by hiding myself. At all costs, I felt that I needed to avoid looks of disbelief or outright marginalization.
It was in that private, alone place that I took refuge in books and in art. And, it was in that place that I discovered the artist, Frida Kahlo (1907-1954), a Mexican artist who lived with pain throughout her life. Although not caused by EDS, Frida Kahlo used her paintings and words to define her physical and emotional state of being. These were words and images that I could relate to—words and images that assured me that I was not the first person to experience pain, and they helped me explain my pain to others. Here are some examples:
- Kahlo often painted herself wearing corsets and braces similar to those I had to wear. Her self-portraits illustrated the pain within her body sometimes by replacing the spine with a broken column (La Column Rota/The Broken Column) or using imagery like arrows piercing her body (Pobre Venadito/Poor Little Deer). Viewing her paintings, I could feel her pain and sometimes I felt she had painted my own pain.
- Kahlo’s words spoke to me in a way that explained my pain. For example, long before being diagnosed with EDS, my feet hurt so much that I daydreamed of ways to transform my shoes or feet. I envisioned the most comfortable shoes as being clouds that cushioned my feet and carried me along without having to actually bear weight. I remembering crying with relief when I read her words, “Feet, what do I need you for when I have wings to fly?” This woman knew my pain.
- Photographs of Kahlo wearing braces and using a cane or wheelchair reflected the life I lived with EDS. When pain prevented her from leaving her bed, she adapted her space so that she could continue to pursue her passion of painting. She said, “I am not sick. I am broken. But I am happy to be alive as long as I can paint.” Like Kahlo, I’d always wanted to be involved in life instead of watching it from the sidelines. And, like Kahlo, drawing, painting, and photography had always served as wonderful distractions and ways to illustrate the pain that I felt.
- Above all, Kahlo’s words gave me the courage to keep moving forward and remain engaged in life: “At the end of the day, we can endure much more than we think we can.”
I will always appreciate the lessons I’ve learned from Kahlo. Having the ability to communicate my pain through art and/or words, throughout most of my life, has been both empowering and practical, and I use these lessons to this day. At a recent doctor’s appointment, for instance, I was given sheet with outlines of the body (front and back) and asked to mark where the pain was. I had colored markers in my bag so I used them to draw in arrows, thorns, ropes, and weights to illustrate the types of pain. The different colors represented the severity of pain consistent with the color-coded pain scale (shared in a previous blog). By doing this, it made it much easier for my doctor to understand what I was experiencing.
In addition to the value of learning how to communicate the physical and emotional experiences I’ve had living with EDS, I’ve also discovered the sheer joy in making art and crafting words. And, when I’m engaged in these creative activities, I’m distracted and not focusing on my pain.
So, yes, my dear mentor, Frida, “… it’s true I’m here, and I’m just as strange as you.” And, although I live with pain, my life is full and rich.
Read more about:
Frida Kahlo: her art and pain
Feel my Pain, Natasha Walter
Pain and the Paintbrush: The Life and Art of Frida Kahlo, Fernando Antelo, MD
Communicating pain through art (general)