Meet our Founder

Imagine your whole life being changed in an instant: one minute you’re healthy, the next minute you’re back and forth to doctors, unable to get a handle on what went wrong. For many of us with chronic illness, this may not be such a leap of the imagination. It was definitely the case for Cyndii when she fell the day before classes started and ended up on a decade-long journey to understand the ramifications of her initial misdiagnosis.

Cyndii was a health teacher with a Master of Public Health. On the day before school started, she was in the building and slipped and fell. The fall itself didn’t appear to be that bad a fall, but it was serious enough that she had to fill out an accident report and go to a doctor. Everything looked fine on x-rays, with just a bit of soreness expected. While they offered a prescription for narcotics, this wasn’t a practical solution since she had to teach. The doctor didn’t feel that the situation was bad enough to be out of work, so they prescribed other non-narcotic meds that would help, although admitted that it would take longer to heal.

That was the beginning of an almost unbelievable turn of events that led to serotonin syndrome, a traumatic brain injury (TBI), the loss of her livelihood, and a chain of doctors that missed all the signs that something was seriously wrong. By a year later, with no improvements in her condition, Cyndii started seeing specialists. She went to a neurologist who found nothing of note. Then she went to a rheumatologist who quickly diagnosed her with fibromyalgia and anxiety. Unfortunately, that incorrect diagnosis and the treatments that followed made everything worse. Multiple other doctors confirmed the diagnosis but Cyndii wasn’t feeling any better with the new treatment plan. She was fainting at work, regularly found on the floor by students and staff, and finally had to leave teaching.

It took 8 years from that initial fall and recognizing her symptoms in a post in this group for Cyndii to finally put everything together and realize that she was suffering from serotonin syndrome which caused cardiac arrest, respiratory failure, killing nerves, burning her skin, and a host of other issues that led to a TBI. It also turns out that the initial fall caused a ligament in her hip to injure her diaphragm, ribs, and spine, and no one noticed for years. Her disappointment and rage at how badly the medical community had let her down is an ongoing battle. However, this has led her to try and do better for others who suffer from chronic illness and may be experiencing trouble getting the right diagnosis.

Cyndii has been looking for a way to put her MPH degree back to work, and when she saw a comment for a new trans-hotline last fall, something finally clicked for her. “You have no idea what it’s like to be able to speak to someone who has lived your life or at least a similar-enough life to understand what those who haven’t can’t begin to fathom.” With that, the Chronic Illness Hotline was born. While she has considered reaching out to other hotlines, nothing ever felt like the right fit for people like her. Interactions with the creative and chronically ill group showed her both how meaningful it is to have community as well as how helpful it would be if someone had a 24/7 support line that they could reach out to in a moment of need.

What she loves about this group (The Rising Tide Society, Creative + Chronically Ill Chapter ) is that we all show up and provide such specific help. “A lot of us are educated for something else, we’ve mourned the loss of a career, and are now trying to be businesspeople with a drive,” she said and would love to provide that practical, on-going, and needed help for others across the country. “Something about our group, that people are overcomers. I’ve learned it’s okay to be me, it’s okay to struggle but we get back up. People inspire me, we watch each other make adaptations in our lives so that we can be more successful than the day before. That’s what I needed.”

There are many challenges in starting a new business, and Cyndii is experiencing those as she launches a non-profit. Navigating laws, understanding how her audience reacts to this new platform, applying her knowledge about social media, marketing skills, and understanding the tools that she needs. She says “Every time I find a new little thing, it comes with three other little things!”

July Member Spotlight
The Rising Tide Society, Creative + Chronically Ill Chapter
Written by: Martine Dardignac