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Karen Nicole Smith, Artsci’08, was already living with kidney failure and heart failure when she was diagnosed with a rare cancer. “I thought I knew, as a person living with two serious chronic illnesses, and having gone through several medical crises, what my future would be like.”

But when she was given the cancer diagnosis, she was surprised at how powerfully damaging this new condition would be. It touched her personally, professionally, and psychologically. She found her worldview, already coloured by chronic illness, deeply altered. “I found a profound new depth of consideration and honesty in living,” she says.

Ms. Smith is the community outreach coordinator for the Standardized Patient Program at Queen’s University. The program provides realistic training experiences for medical, nursing and rehabilitation therapy students, allowing them to practise their skills before working with “real” patients.

She also volunteers as a patient experience advisor at Kingston General Hospital, bringing her own perspective as a recipient of health-care services to ameliorate hospital services for others.

“My own doctor would have aced his clinical education session on breaking bad news. He was optimistic without giving me false hope. He was compassionate without crossing the patient/doctor lines. He gave me time to process by giving me information and then pausing to let me take the information in.

“It was clear that he felt for me. He faltered a little – evident in an awkward moment here and there. I think those moments meant the most to me, though. They reminded me that I was speaking to a human being who could – or perhaps could not – imagine what getting this diagnosis felt like. I like both sides of that. The side where I know that my doctor is trained to take care of me. I also deeply appreciate that, beyond being my doctor, this is fundamentally one human being communicating with another about a hard topic. The conversation does not have to go perfectly. The communication just has to be real.”

“I’ve always felt confident to share my perspective in my role as patient experience advisor. I sat in on multiple committees or forums and shared my perspective on what I’d experienced
in health care and what I think could be done to improve it.

“After experiencing cancer, I felt compelled to share at a deeper level. My instinct to cushion the reality of my perspective disappeared. Being mindful of doctors’ and executives’ feelings became trumped by an instinct to share the depth of the experience – for what it could do for other patients. I finally had my priorities straight. Helping my fellow patients trumped being cautious. From the perspective of not being cautious, I know I run a risk of being harsh. If the point is to communicate, a harsh truth will have more impact than a careful half-truth.”

Five ways you can be your own best advocate as a person living with a serious illness:

Ask for what you need from your friends, family and your health-care team. Communicate with them as honestly as you are comfortable to.

Treat yourself. I make sure there are things in life to look forward to. It can be as simple as listening to your favourite music, eating a meal you love, wearing something fabulous – whatever gives you a positive boost.

Set yourself up for success…whatever success is for you. In my case, dealing with the obstacles of health challenges, and all they entail, I have to keep myself sane. My formula for sanity is part spiritual and part physical. I recalibrate myself daily with positivereading, morning yoga meditation and tough sessions at the gym. Take the time to learn what works for you – and then do it.

Keep challenges in perspective. Despite the gravity of all three of my health challenges, I don’t give any one of the three my full focus. If I must focus on some aspect of my health, I make sure that my energy is balanced out with other positive, normal life things.

Understand your role in health care – and that you can have a role. This can take the form of sharing your perspective with health-care professionals. It can be reaching out to the persobeside you in the waiting room who looks terrified. We can all contribute to making things better for others who are going through what we’re dealing with. I can make even the most disruptive health challenge positive.

- Karen Nicole Smith

Editor's note:  Karen Nicole Smith died at home on Oct. 16, 2016.  A tribute to her has been posted on the Undergraduate School of Medicine blog.