When a support group changes someone’s life for the better, it also has the potential to improve the lives of others in a ripple effect.
That has been the experience of Langley resident, Sarah Aragones, who credits the Fibromyalgia Well Spring Foundation in Aldergrove with re-establishing her strength and determination so that she can do the same for others.
She hasn’t had an easy journey to arriving at the best version of herself. At age 39, she’s been navigating the health-care system for more than half her life without the foundations many of us would need to persist in finding answers.
Her family was filled with active people who thought having a disability was a death sentence.
“Navigating having significant illnesses that make it so that I’m unable to work a career makes me useless in a lot of people’s eyes,” she told The Star.
“This is going to affect me for the rest of my life and I can grieve that and it doesn’t make me weak.”
Weak is perhaps the last term someone speaking to Aragones would think of to describe her.
In her early teens, when she began menstruating, she experienced extreme pain. She was told “everyone gets cramps,” but she knew her situation wasn’t normal, despite no one taking her seriously.
“I was diagnosed with stage four endometriosis and that was 2014,” she said.
She went through three surgeries in 2015, which improved her quality of life significantly, but she could tell there was more to her condition.
As is often the case for those who experience long-term, chronic, undiagnosed illness, Aragones grew used to hearing that her problems were in her head. Post-surgery, she was told to get used to her situation because it was as good as it would get.
She’d had to leave her job to focus on her body’s needs. Then, at a routine massage therapy appointment, it was suggested she might have fibromyalgia. She told her doctor.
“I basically said, ‘I don’t know what this is, but my massage therapist thinks I might have it’,” Aragones recalled.
“She did a pressure test. Then she said, ‘It looks very clearly like this is a positive, but I don’t know enough about this.’ I didn’t know what it was either.”
More waiting to see a specialist, but eventually she got in for her diagnosis.
“First, I met with an intake nurse,” she recounted. “Nobody had ever spent that length of time with me to listen to me. To not be interrupted, not be gaslit and not be dismissed. It was so validating.”
The diagnosis was fibromyalgia and ME-CFS, formerly known as chronic fatigue syndrome. But despite the diagnosis, she was told there wasn’t much anyone could do for her.
She knew what was wrong, but not what to do about it.
She’d been well-supported in the job she’d found following her surgeries, but felt she wasn’t able to give in the way she wanted. Together, she and her employer decided she should take a medical leave.
“I would get tremors where I couldn’t pick up the phone or write with a pen,” Aragones said. “I was in a really toxic marriage and I had no quality of life. It was really discouraging for me to lose my second job.”
In 2018, about a year after being diagnosed, she decided, boldly, to take an afternoon for herself and visit a women’s expo in Cloverdale. It was one of the best things she ever did. She saw the purple banner and the word fibromyalgia and started asking questions.
“I passed by the table where Cheryl [Young] and Nigel [Thom] were sitting,” she said. “They sat with me for like, half an hour.”
Young, the founder and executive director of Fibromyalgia Well Spring Foundation and Thom, the business manager, encouraged her to come to a support group. The rest, as the saying goes, is history.
She credits the organization with helping her in many ways and in doing so, it has given her the ability to help others.
“We teach each other how to advocate with doctors… about asking questions. Helping navigate that system has been huge,” Aragones explained. “We give each other a heads-up about certain deals. Most of us are on disability or are poor.”
Adding to the health challenges, she and her young daughter left an abusive marriage after finding support from the group.
“They helped me leave my marriage, they helped me find affordable housing, they helped me when I couldn’t afford food,” she said. “These are people who aren’t rich for the most part. These are people who are also struggling, who are supporting people who are struggling.”
Fundraisers, like the upcoming That '70s Show event on Tuesday, May 13, at Adrian’s at the Airport, bring that support to people who need it.
Tickets for the Fibromyalgia Well Spring Foundation event are $80 per person for a gourmet buffet dinner, silent auction, draws, and the songs of ABBA performed by Alyssa Nielsen.
Funds raised allow for the support group to continue and any extra money goes towards little extras people greatly appreciate.
“It’s not huge things, but if we have the money, we’re able to support the people who need it,” explained Aragones.
She’s been on the board of the organization and continues to be actively involved, but has needed to scale back slightly to parent her youngster. When opportunities have arisen to do more, she’s grabbed them because of the skills she gained through the support group. One of those opportunities was enroling in the Complex Chronic Diseases Program at B.C. Women’s Hospital and Health Centre, which has a lengthy waitlist.
“That program helped me immensely. I was able to bring the knowledge I was learning in the program back to the group,” she said. “That relationship allowed me to help so many people who would not normally have access to that program.”
She’s also been part of the endometriosis pain clinic and could share information from that, because, as she’s learned, there is a correlation between endometriosis and fibromyalgia. Together with Young, she’s also learning that a large number of people within the support group have been through abusive relationships. She’s exploring why that connection might exist.
But mostly, she’s celebrating the ability to live completely and share her journey with others.
“I’m finally at a place where I can accept my body how it is and not feel cheated,” Aragones said. “I’ve been able to teach my child that I am strong and mighty and that I need a little bit more time to rest.”
