Conquering the Battle Mindset: A Slow Path to Acceptance
At the age of 19, Noelle Lopez moved to the San Francisco area with the dream of becoming a pharmacist, following in the footsteps of her great-grandfather and grandfather. That dream was shattered just months later, along with her ankle, when she slipped on the wet stairs of her apartment complex.
It took sheer determination to scoot herself down a flight of stairs in the pouring rain and begin knocking on doors for help. She learned she had a severe ankle fracture that would require surgery, but her doctor was confident that because she was young, she would be fine.
That was not the case.
AS PAIN INCREASES, OPPORTUNITIES ARE LOST
Noelle dropped out of school, had her first two surgeries, and began intensive physical therapy. She later enrolled in pharmacy technician school and began an externship, but when her pain increased and two additional surgeries failed to resolve it, Noelle was able to finish the training program but had to quit the job she loved.
What followed was a slew of appointments, specialists, treatments, more surgeries, and few answers. She eventually was referred to a pain management doctor, who would become a true partner in her treatment plan for the next two decades. He finally diagnosed Noelle with RSD/CRPS three years after her fall.
Reflex sympathetic dystrophy (RSD), now known as complex regional pain syndrome (CRPS), is a chronic neurological syndrome that often follows an injury. It is characterized by severe burning pain beyond the scope of the injury, pathological changes to the bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch. It’s often referred to as the “suicide disease” because of its severity and how difficult it is to treat.
Despite an aggressive schedule of sympathetic nerve blocks, physical therapy, and medications, Noelle was living with an 8 out of 10 pain level. She had always been an extrovert but now watched her social life plummet.
“My friends weren’t super interested in hanging out with someone who couldn’t go to concerts and do all the typical young people things,” she says. “It was understandable, but it was difficult.”
TAKING STEPS TOWARD ACCEPTANCE
Having lived with her CRPS diagnosis for eight years, during which it spread to all four limbs, Noelle began to connect with others with the same condition, through social media groups, volunteer work, and conferences.
“Being able to learn about my disorder, meet other people in pain, and hear about new treatments and research was a really big deal,” she says. “I feel like this is the first time I had hope.”
Another huge turning point for Noelle was when she began therapy.
“I discovered I was constantly trying to avoid the emotional impact of pain and disability,” Noelle shares. “I was trying to shut it out and move forward, like a warrior. I had the mentality that I’m going to find a cure for this and I’m going to be fixed, and when I didn’t, I blamed myself. I realized that my coping skills had possibly not been the best.”
HELPING OTHERS FIND ACCEPTANCE, TOO
There were times when Noelle contemplated ending her life but didn’t feel safe enough to share these feelings with anyone. This played a big role in why she wanted to get a degree that would allow her to work with other individuals living with pain.
“There’s a lot of stigma around chronic pain and suicide, and I don’t think a lot of therapists fully grasp the amount of grief and unique challenges those of us with pain experience,” she explains.
Noelle enrolled in college, attending classes remotely and utilizing accommodations and assistive technology. She started pacing herself, setting realistic expectations, and reframing how she thought about her pain.
Taking remote classes in psychology and family and human development, she joined a club for students with disabilities, took a life-changing disability studies course, and became a teaching assistant.
“Through my coursework as a disabled student taking this class, I confronted the feelings of shame and internalized ableism I had held, and I connected with other disabled students,” Noelle says. “It was a healing experience.”
She was invited to train to become a support group leader through the U.S. Pain Foundation, creating a supportive space for others that she hadn’t initially had for herself. She also became a crisis counselor for the Crisis Text Line.
“It’s really distressing the number of people who have ended their life, especially being part of the chronic pain community and specifically the CRPS community,” she says. “It’s something that’s prevalent, and it’s not talked about enough, as there’s a lot of stigma around the topic.”
After completing a research project that looked at the sociological aspects of suicide and chronic pain, Noelle graduated summa cum laude in May 2022, with plans to apply for a master’s of counseling program in the fall.
RE-LEARNING TO DREAM
Noelle has learned to appreciate the small things in life. She has also discovered how resilient she is, and has developed a passion for helping others. She has seen firsthand the injustices that disabled folks like herself face and how important it is to advocate for a more inclusive society.
Today, Noelle manages her pain by pacing herself, using a new spinal cord stimulator, and taking muscle relaxants, clonidine for pain, and intranasal ketamine. Spontaneity can be difficult, and daily activities can be challenging. She does her best to get in some form of movement every day, along with guided meditation, a seated yoga practice, and time spent in nature. She enjoys cooking, using adaptive tools and strategies, and spends time at the beach with her spouse and their Great Dane, Zara.
She has been able to formulate new dreams and actually feels like she can dream now.
“I wasn’t dreaming before,” she says. “I was trying to beat this pain, and there was no room for dreams or hope at all.”
Now her biggest hope is to make a difference by continuing to help others, particularly those that are newly diagnosed with pain or chronic illness, so that they, too, can feel empowered to create a meaningful life and to thrive.
“I think things would’ve been different if I had accepted myself as disabled and had known about the disability community. I could’ve asked for accommodations instead of resigning, but I thought unless I do it the ‘normal’ way, I’m not a whole person.”