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

Late last year, at the age of 51, I got sick for the first time ever. My family doctor couldn’t figure out what was wrong with me, so she told me to go to the ER. I resisted this for several weeks because I hadn’t been shot or anything. We should not be delivering primary health care via the ER – it’s much too expensive! After about two months, without any other options offered by my family doctor, I finally realized that if I was going to get any help I had no choice but to present in ER, even though it wasn’t a life threatening situation. I wasn’t even in any pain at that juncture.

I spent about 4 hours in the ER of the hospital where I work (as a social worker) and was treated quickly and with dignity – in no small part because I am on staff. I was told, in so many words, that there aren’t many “perks” in our field, but that when we get sick, we will be cared for. I thought this was a bit unfair towards people who don’t happen to work in a hospital. This was pretty much the end [...] continue the story

I am preparing for my future, its a mental preparation, I am not afraid, I hope to face things with an inner calm and to have the grace to dispel frustration…

Some things you can fix, others you can’t. Parkinson’s disease is for the moment one that can’t. As each day passes another little piece of me slides away with illness and as each day passes I counter balance this erosion by making something good happen.

Frustration could so easily wear you down, especially as someone with little patience, but I have learned to simply go with the flow or to find a solution, it’s about staying in charge, it’s about being you, it’s about life.

Colleen Henderson-Heywood September 26, 2010

More from Take One Minute

January 23,2009 Kathryn lives with muscular dystrophy and has become a counselor to help others deal with personal limits