The Lived-Experience Expert Title. . .

I consider myself a lived-experience medical expert.

From my perspective everyone who’s experienced challenges in their health (who lived to tell) qualifies as a lived-experience expert.

My experience with Chronic Kidney Disease and Heart Failure has given me a lot to draw from. I was diagnosed at 18 and I’m in my 40’s now.

  • I did pre-dialysis, preventative chemotherapy.
  • I’ve done Peritoneal Dialysis.
  • I’ve struggled with the decision to be on the transplant list – with fear around living with the anti-rejection medications.
  • I’ve had a kidney transplant. I’ve lived the life of a transplant recipient for almost 13 years.
  • I suffered the failure and removal of a transplanted kidney.
  • I’ve done Peritoneal Dialysis with a cycler and the manual way.
  • I’ve suffered a near-fatal cardiac arrest.
  • I’ve been diagnosed with Thyroid Cancer.
  • I’ve been forced to transition from Peritoneal Dialysis to Hemodialysis in a time of near-fatal crisis.
  • I’ve done in-centre dialysis.
  • I’ve transitioned to home hemodialysis – without a care partner, no less.
  • I’ve used fitness to improve my health and change my life.

Quite a medical history.

And in between those major milestones were many mini-milestones that I could list – seemingly to infinity. Operations and procedures figure in here.

On an individual basis, I could write a book on each of the experiences listed.

The moments of fear. Feeling out of control. Of making peace. Of learning the practical “living-with” these medical circumstances. Negotiating through the medical world, with it’s challenges and obstacles, to advocate for my best care. There is a lot there.

When I first started volunteering as a Patient Experience Advisor, I began to realize how valuable my lived-experience was.

In having experienced these things, and also being comfortable to share my experience (in both personal and more “broader patient-specific” terms), I could help clinicians and executives understand the patient perspective. With the patient perspective we could collaborate to make practice and policy better.

I feel blessed that I am confident enough to speak, write and consult on what I’ve been through.

Sometimes my confidence comes from understanding that my fellow patients may be too sick to share their experience. Or too tired. Or not confident enough. Knowing that other patients can benefit from my voice, and input, motivates me to give this advocacy work my all.

I am very encouraged that medicine is finally ready to hear what patients have to say. I see the tide turn to where the KGH slogan, “Nothing about me without me”, is really being taken to heart. Little encouraging pockets of patient-centered medicine that are building in momentum.

I don’t think medicine should have ever proceeded without the patient voice. It seems like a no-brainer now. And now that patients are present at the table, I cannot imagine things happening any other way.

I think of it now like planning a wedding and not getting the input of the bride. It seems so ridiculous for medicine not to have ask us patients what we wanted. What we thought. And then to act without our input being included. To make assumptions about what we’d want and need as patients. Many times without the perspective of ever having been a patient themselves. Wow.

Medicine is for patients. Isn’t it?

When I think about my life I would never had guessed that my most valuable expertise would be built on the foundation of my blood, sweat and tears. Of my knowledge having lived with Chronic Illnesses.

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What I wouldn’t do to be an expert on astronomy? Or some kind of surgeon with a valuable specialization?

To be healthy and not know the things I know.

The price I paid to be a lived-experience medical expert is higher than any time spent in university . . . or the debt of even getting multiple degrees.

I would prefer to have $150, 000 in debt over my head . . . to have had an advance education (making me an expert), than to have lived and learned the hard way with these diseases.

Feeling this strongly, I am sure you’ll understand why I consider myself an expert. And why I feel I can ask for the respect that any expert asks for.

I paid a high price to know what I know. All patients pay a high price to know what we know.

Higher than I can properly articulate.

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