“My body was failing, no one knew why”

How one program at BC Women’s Hospital + Health Centre is uncovering the answers to some of the world’s most debilitating + mysterious diseases.

Home | Impact | “My body was failing, no one knew why”

Imagine it, everything in your body seems to be failing. You are forced to leave your job and miss out on time with loved ones. You’re just too tired, in too much pain to do anything that once brought you joy.

You know something is wrong, but your test results keep coming back negative. Some of your physicians might even start to question if you’re making it all up.

For Hilary Robertson, and 100,000 other British Columbians with complex chronic diseases this isn’t just a nightmare — it’s their reality.

“I had neurological impact, difficulty speaking and swallowing, muscular dysfunction and no one knew what was wrong. I had CTs, MRIs, colonoscopies, a bronchoscopy, ultrasounds; was referred to neurosurgeons, gastro-enterologist, ENTs, dietitians, immunologists…One neurologist suggested I ‘get on with life’.”

These individuals, 80% of whom are women, suffer from life-long diseases that can’t be directly identified by any tests and many doctors were never trained to look for.

“I pushed myself to complete collapse trying to find an answer — I was virtually bedbound. 7 years of searching and I still had nothing.”

“Finally, I discovered the Complex + Chronic Disease Program at BC Women’s Hospital + Health Centre. They diagnosed me with Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) and Fibromyalgia and I qualified for permanent disability status.”

The BC Women’s Health Foundation donor-funded Complex + Chronic Disease Program (CCDP) is the first of its kind in Canada dedicated to treating patients with diseases like Hilary’s. The team, led by internationally renowned clinician-scientist, Dr. Luis Nacul, works tirelessly to provide patients with the answers, and care, they so desperately need.

Recently, our donors joined forces with the Canadian Institute of Health Research to help accelerate the program’s ground-breaking work by funding a CCDP Research Fellowship. The fellow, Dr. Zaya Chuluunbaatar, will help lead research on a national scale to further uncover the mysteries of these diseases.

And Hilary? She reports that she is back to enjoying life. While she knows that an earlier diagnosis may have prevented her from having a permanent disability, she feels fortunate to have been able to make some recovery.

“While my life is very different than before my disease or in contrast to others my age, I am content and, in many ways, live a rewarding life.”

Our 2022 Fall Impact Report, INVISIBLE TO INVINCIBLEhighlights a handful of ways that your investments are amplifying the voices of women, bridging the gender gap in women’s health research, and helping to fund vital equipment and upgrades at the province’s dedicated women’s hospital.