Living with a chronic illness means you’re constantly facing forces beyond your control. So it’s only fitting that Jhoanny Perez, 27, landed in a career that helped reverse the tides of natural disaster. The St. John’s University graduate currently works at the American Red Cross as a service member in a National AmeriCorps program. Her job involves educating youth and adults about fire safety and hurricane preparedness by presenting in schools and installing smoke alarms with other volunteers in resident’s homes.
Her job and volunteer work has taken her all over the world, including to Haiti and South Africa. These were particularly rough visits for her as she spent the majority of these trips suffering the effects of severe endometriosis.
According to the Endometriosis Foundation of America, “[Endometriosis] occurs when tissue similar to the endometrium (the lining of the uterus) is found outside the uterus on other parts of the body. Generally, endometriosis is found in the pelvic cavity. It can attach to any of the female reproductive organs (uterus, fallopian tubes, ovaries), the uterosacral ligaments, the peritoneum, or any of the spaces between the bladder, uterus/vagina, and rectum. Endometriosis can also be found, though less commonly, on the bladder, bowel, intestines, appendix or rectum. It affects girls and women during their most productive years, and can impact all aspects of their lives – school, careers, finances, relationships, and overall well being.”
“I had very heavy bleeding the first time in Haiti,” says Perez. “It was a big challenge and I tried not to let it stop me.”
During the mission trip she worked to bring aid to orphans and partcipated in medical and public health brigades. She spent three weeks in Ghana training women in solar energy and establishing a solar energy center for them.
“This is an illness that is not always recognized as a disability,” says Perez. ” Some women are in pain 24/7. I am in pain fifty percent of the time, but when I get my period I bleed so heavily that I have developed anemia. I struggle during the full seven days of my period each month to get to work and participate in normal activities. I have to call out of work at least three or four days each months where I just can’t get out of bed.”
The disease has a massive impact on women’s physical and emotional health. The treatments include expensive surgery by top physicians who don’t always take Medicaid or public insurance. Downpayment for surgery can be as high as $10,000.
“Their is only a 8% chance of reoccurrence but this isn’t an option for most of us who cannot afford it,” says Perez. “Endo is an expensive condition. When in pain, women visit the ER and are told the pain is all in our heads. We aren’t believed and understood. Over twenty Endometriosis patients have committed suicide over the past two years.”
She is grateful that her job gives her the freedom to take off the days when she most needs it. Her career may be unorthodox for a chronic illness patient, but with appropriate preparation and open communication with her employers she’s been able to manage her symptoms while doing the work that is most meaningful to her.
Are you a chronic illness patient who is currently employed (or own a business) that fits your needs despite your disease? Send me your story at Ilana@ChronicallyEmployed.com!