As a child, Amber had a very rare illness that made the small blood vessels in her skin, joints, intestines, and kidneys inflamed and bleed. Amber was so ill her mother thought Amber was dying.

But Amber survived, got married and had children and thrived...until 3 days after having her gallbladder removed, when she experienced horrendous pain, far worse than the pain of childbirth.

Painkillers did little to stop the upper abdominal pain Amber was experiencing, and when her blood tests came back normal, doctors suggested Amber was faking it to get pain medication. 

But the doctors weren’t listening to Amber’s reports that pain medications didn’t help, and sometimes made the horrific pain even worse. In spite of writhing in pain on the emergency room floor, Amber’s pain was often minimized or outright dismissed and she was labeled a drug seeker.

While Amber’s illness turned out to be a rare complication of gallbladder surgery, her experience of pain being dismissed, or being accused of lying, or of having psychological problems, is not rare. 

In fact, it is hard to find any one with a complex or rare disease that has not experienced a doctor or nurse accuse them of faking pain or psychologically manifesting illness. It is so common, that it is a reflection of the culture of arrogance among health care workers, especially physicians.

It also explains why so many people with complex or rare diseases have medical PTSD. Few things are more traumatic than being incredibly sick, and by extension extremely vulnerable, and being accused of lying about it. This is why so many people distrust doctors. 

Connect with Amber:

Amber's channel: Spincter of Oddi is Real Youtube

 

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Be my Guest

I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer.

If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com 

Need a Counsellor?

Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error.

If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments.

**For my health and life balance, I limit my number of counseling clients.** 

Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com

Scott Simpson: 

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.