Invisible Illnesses Are For Real

Being confined to a wheelchair it was obvious to those I met that I was not as able-bodied as others. However, people living with chronic pain or illness often don’t look any different from those around them. It is difficult for people to understand the struggle you experience when you don’t look sick or in pain.

My second bout with a rather rare autoimmune disease required that I take heavy doses of prednisone and chemotherapy. This was not an option. The autoimmune disease would have attached my kidneys and lungs and eventually it would have led to death. When I told people I was on chemotherapy the first thing they said was, “What kind of cancer do you have?” Cancer is a scary word, but by no means the only life threatening reason to have chemotherapy.

This is true of many of us. We experience “invisible illness.” What experiences do we share in this invisible universe?

We may experience guilt, embarrassment, and isolation. We may feel it is our fault that we got sick or that our bodies broke down in some way – as if it’s a personal failing on our part. We live in a culture that worships wellness. It’s okay [...] continue the story

Michele is Gut Inspired

Published by GutInspired on Jun 27, 2011

Gut Inspired is a group of Canadians living with Crohn’s disease and ulcerative colitis who have joined forces to increase the awareness of inflammatory bowel disease (IBD) in Canada, offer support for individuals living with IBD and provide personal experiences to assist others living with IBD learn how to better manage their disease.

Participatory Philosophy

By: Kathy Kastner March 30, 2012 The Society of Participatory Medicine supports “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.” This concept seems especially essential for anyone whose quality of life is constantly adversely affected by a health condition: get in the driver’s seat.

 

Be that as it may, being a participatory patient is not for the faint of heart. As a member of the Society, I decided to articulate my own philosophy:

My 8 Point Philosophy of Participatory Medicine

1. I want to learn about my health issue(s).

* I feel I have sufficient skills and capabilities to be participatory. * I understand that, along with the learning and empowerment process, come stresses, disappointments, irritation, frustration, and exhaustion.

2. When I don’t understand something, I ask for an explanation.

* In the doctor’s office, I seek strategies to improve meaningful communication, and ask that jargon be written down so I can do my own research. * Before a doctor’s appointment, if I’m fearful, I research my symptoms and conditions to the best of my abilities, and bring my questions with me.

3. I’ve learned to do my own research, using [...] continue the story

Jennifer Dee on using her bad healthcare experience to make a difference

In this video interview, Jennifer Dee, Patient Experience Advisor at Kingston General Hospital’s says: “All of us just want to ensure that whoever arrives at KGH after us has a better (patient) experience and outcome than we personally had.” In 1997, Jennifer contracted C-difficile at KGH, and subsequently got involved to use her own harrowing healthcare experience to make a difference for others.

Since 2009, KGH has implemented many patient-initiated changes to improve quality, safety and service, all grounded in its bold KGH 2015: Strategy for Outstanding Care Always. KGH created a 17-member Patient and Family Advisory Council (12 patients and 5 staff) to insert the patient perspective into wider decision-making. Jennifer Dee sits on this Council.

More Change Foundation Stories

Painting Pain

Hi, my name is Heather Bolinder and I am a chronic pain patient.

I am a native Cape Codder from Massachusetts and I was a very active person, involved in volunteering, founder of the Harwich Community Playground, a member of the Cape Cod Art Association and Harwich Artist Guild. I worked as a volunteer E.M.T in Colorado, as well as a private duty nurse’s aid and raised two beautiful children. I graduated from Mount Ida College with a degree in Fine Arts and went on to teach art at a local studio as well as a professional artist, which is where my pain story begins.

It was a beautiful day in late July of 2007 – I was sitting working in my garden when all of a sudden I had excruciating pain in my back. I was paralyzed, unable to stand; it was the most devastating pain I had ever experienced. The pain was shooting down my spine into my hips, pins and needles in my legs. I was nervous, scared, I did not know what to do. I slowly crawled into the house, called 911 and was taken to the hospital. My life was FOREVER changed in that one moment.

I arrived [...] continue the story