Meet Our #COTW Beverly – ‘Body Literacy Is so Crucial’

The road to an official diagnosis has been a long, and at times, traumatic one for #WCW Beverly (she’s asked us to omit her last name), who helms the Instagram page @unwellunlimitedly. But just as her Insta suggests, Beverly (or Bev, as she is also known) keeps an optimistic mindset.

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As a 15-year-old who’d never had a period before, Bev didn’t realize that a painful and irregular cycle wasn’t normal.

“When I was younger, I saw a gynecologist who gave me a birth control pill to try to regulate my periods,” she said. “I stopped using it after a while because I didn’t really like it.”

Even times when she had her period for an entire month, or went several cycles without having one, she assumed it was just something everyone went through.

“I thought what I was feeling was normal. And I just thought I had to suck it up.”

Then, at 28, everything went haywire. Bev fell ill with a virus – a mysterious virus that caused extreme pain and sickness so severe she had to see several doctors just to find out what was happening to her.

“I had a virus that triggered really intense pelvic pain, as well as joint pain,” she said. “As well as nausea, fatigue, and other symptoms.”

While she was in the hospital a gynecology resident recognized her symptoms overlapping with those caused by Endometriosis. After being treated for months with various medications to no avail, she was referred to an Endometriosis pain specialist. Bev was also diagnosed with fibromyalgia during this time, a condition that inflicts widespread pain that may be caused by the way the brain processes pain signals.

In May 2018, she had her first excision surgery.

“I was relieved to find an answer when I was diagnosed, but unfortunately, my pain was not relieved at all,” she said. “(It) has actually gotten worse. The doctor referred me to another Endometriosis specialist who further specializes in Endometriosis on the nerves.”

Bev is hopeful she’ll feel more relief with another surgery.

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In the two years since she first received a diagnosis, Bev hasn’t been able to work consistently. (She was formerly in digital marketing.) Bev still does some freelance work, but she mainly depends on her newly-minted fiance, Phil. He’s there for her financially, but more importantly, emotionally.

“I’m very grateful and lucky to have an empathetic fiancé.” 

As for the other relationships in her life? Complete Endo sabotage. She spends much of her time at home alone thanks to crippling migraines and Endo symptoms.

“I feel guilty about (that),” she said. “It’s definitely changed the nature of my relationship with a lot of my friends and family.”

There are moments, however, where she’s able to make the most of what she’s been given. Bev was able to attend the Endometriosis Summit in New Jersey in March 2019, and she works to bring attention to those who are living with disabilities via social media.

“It’s important for everyone to know, whether you have Endometriosis or not, that every person with the illness or any chronic illness needs to be treated as an individual,” she said. “No one’s experience is exactly the same. They may have other illnesses or stressors impacting their health.”

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“Life with Endometriosis is extremely difficult and it’s impossible to convey sometimes exactly how difficult,” she continued. “If you don’t understand a person’s experience, approach them with openness and curiosity. Ask questions and don’t make assumptions.”

For those who are dealing with health problems, she aims to keep them aware of their own strengths. She believes that if someone knows something’s wrong with their body, then they should keep to their convictions, and push until they get answers. Because you know yourself best.

“Do your best to learn about your body as much as possible so you can be articulate when seeking help,” she said. “Body literacy is so crucial.”