I’ve been living with chronic illness for as long as I can remember. Over the years I’ve been diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Ehlers-Danlos Syndrome (EDS), generalized epilepsy, chronic migraines, and I’m still being tested for other conditions.
When I was just two and a half, my adoptive parents signed me up for gymnastics in Canada because I loved climbing, swinging, and flipping. Thanks to EDS, I was unusually flexible and did well in the sport. But I was also the kid who was always hurt. I bruised easily, fainted with fevers, had constant joint pain, and even dental work was unusually painful. Looking back, the signs were all there.
As I grew older, sports helped mask some of my symptoms because building muscle gave me extra support. Even so, managing pain and keeping myself hydrated were constant challenges. I assumed it was just the norm and never mentioned it to my doctors.
During high school, I became involved in theater and film, occasionally even performing minor stunts.
But I often missed out because I was injured or fainting. I graduated with honors in 2012 and went off to Hawaii for college. At first, I surfed on weekends but stopped after too many injuries. With less activity, my symptoms worsened.
In 2014, I needed surgery for a torn hip labrum. The scans showed damage in both hips, but we thought it was just from the tear. Now I know it was because of dislocations from EDS. After surgery, my surgeon noticed how flexible I still was. He tested me for hypermobility and mentioned Ehlers-Danlos Syndrome. Soon after, a rheumatologist diagnosed me with EDS type 3, now called hEDS.
At the same time, I was having seizures almost daily. A neurologist dismissed me, saying, “All girls your age have seizures.” He ran a short EEG and sent me away. Out of desperation, I got a service dog. My first, Ruby, picked up on my seizures naturally but couldn’t handle city life, so she went to live happily with my parents. Then I got Snickerdoodle, a Goldendoodle, who was my partner for years. She alerted me to seizures, fetched medicine, and even applied pressure to help with joint pain. She honestly saved me during a time when doctors wouldn’t listen.
In 2016, I took medical leave from school but returned and graduated in 2018. That was a proud moment. Later, in 2020, I got married. Thanks to my husband’s insurance, I finally started seeing doctors who took me seriously. A new neurologist ordered better tests, and I was finally diagnosed with generalized epilepsy. Medication now keeps it under control while I raise my toddler.
Living with EDS and epilepsy is far from easy. Every faint or seizure comes with the risk of injury, but I remind myself I’m lucky compared to some in the community. I’ve learned to push for tests, insist on care, and not settle for being brushed off. Having a support system has made all the difference—my parents, my best friend Tavi, who also has chronic illness, and of course, my husband. He always backs me up, even jokingly threatening to crawl on the ground if anyone questions me for using my disability placard.
Funny enough, EDS even brought us together. When we first met on a dating app, he told me he was a cardiac sonographer. I immediately said I knew what that was because of all my heart scans. That led us into a conversation about EDS, and the rest is history.
I’ve gone through more than enough difficult experiences with medical care.
One doctor even dislocated my kneecap during an exam after I warned him not to. And after giving birth in 2020, I nearly died because my complaints of chest pain and shortness of breath were ignored. Days later, my husband rushed me to the ER where doctors finally realized my heart was failing, and my lungs were filling with fluid. A compassionate nurse that morning told me, “You’re right where you need to be,” and I’ll never forget that it saved my life.
Experiences like that are why I share my story online. I want other Black women with chronic illness to see themselves represented, to know their symptoms are real, and that they deserve care. I post not just about chronic illness in general, but also about how symptoms can look different on Black skin. My hope is that others feel less alone and realize, just like that nurse told me, that they’re in the right place and can be in good hands.
