Van Duinen started the Women’s Chronic Pain/Illness Support Group, which meets at 6 p.m. Wednesdays at On The Path Yoga in Spring Lake. The group is open to any woman who is suffering from a chronic illness or pain.
During the weekly meetings, women share their experiences and provide support to each other. Once a month, a professional from the community comes in to speak about topics related to chronic pain and illness.
Van Duinen, a Spring Lake resident, said the group provides an educational piece so women walk away feeling empowered. Most important, Van Duinen said, is that group members are able to connect outside of the one-hour meeting.
The group first met in March.
Van Duinen has a master’s degree in social work and practiced for 17 years. Her experience includes working at the Child Abuse Council, Child Protective Services and in mental health.
Starting the support group stemmed from her own experiences.
After giving birth to her daughter in 2002, Van Duinen said she began having “strange symptoms.” She said she went from begin active and working to not feeling well, dropping to 90 pounds, and being bedridden.
Over the course of two years, Van Duinen and medical professionals searched for a cause. Although testing revealed some oddities, there wasn’t enough information for a diagnosis, she said.
As a mental health practitioner, Van Duinen said she saw how she was being looked at with a “skeptical eye.”
Through her own research, Van Duinen, now 49, said she initially diagnosed herself. A neurologist at the University of Michigan conducted a biopsy of muscle in Van Duinen’s right thigh, which proved she has mitochondrial/metabolic disorder with a keratin deficiency.
Van Duinen said one of her biggest takeaways from the experience is that patients need to be their own advocates and push for answers.
Van Duinen has neuropathy in her hands and feet up to her knees, and she has ocular problems. She follows an organic diet and takes a vitamin cocktail to help the mitochondria of her cells. She also walks 20 minutes a day to keep from losing too much muscle.
Van Duinen explained that her body doesn’t metabolize properly, and she experiences chronic pain.
Although Van Duinen might be fine and feel well for several days, she says she could then have days where she doesn’t feel well. She tries to hide her pain and symptoms behind her sense of humor.
One morning in January 2017, Van Duinen felt “awful” and turned to social media. Previously, she would turn to her sister for support, but her sister died from cancer in 2015.
Van Duinen posted a message on Facebook explaining how she felt and that she looked for a support group with 24-hour support and offered education, but couldn’t find any. She asked if anyone else felt the same.
About a dozen women responded, Van Duinen said.
Sandy Parker, owner of On The Path Yoga, also reached out and said the group could meet in a room at her business. Parker said she’s passionate about women’s health, and allowing the group to meet in her space also offers an opportunity to learn about her business and practice and ways to heal.
Parker, who also runs The Vital Path as a private practice, said chronic pain and illness is becoming an epidemic because the root causes aren’t being addressed.
Looking ahead, Van Duinen hopes to see the group grow. She said it isn’t just about the hour-long meeting — it’s about creating a support network.
“I want them to walk away with something and to know there’s women out there,” she said.
You can email Van Duinen at [email protected] for more information.