Stigma of Illness (Part III)

My last post offered tips for recognizing stigma. My key message was that Healthy Survivors have a right to choose whether or not they advocate to destigmatize the disease that has become part of their life.

Today I'll tackle the challenge of dealing with this stigma.

If I've learned anything from the past 20 years of my survivorship, it is this: The path to my happiness depends on my being at peace with me.

As long as others see me as damaged goods, it will take effort for me to feel whole and live fully. But this can be done.

In contrast, if I see me as damaged goods, feeling whole or living fully becomes impossible.

I know this sounds counter-intuitive, but it helps to step back and ask, "How do I feel about people with my disease? Do I stigmatize my disease?"

Preconceptions and beliefs don't turn off like a light switch at the moment of diagnosis. They may go underground and become subconscious, but they can continue to affect your outlook. In doing so, they can interfere with your ability to get good care and live fully.

A necessary first step for my dealing with stigma in healing ways was look within, sometimes with the guidance and support of a trusted friend or professional counselor.

Survivors who use knowledge and hope to cleanse themselves of self-stigmatization have the foundation needed for dealing with stigma in their day-to-day life.

My next post will offer practical tips.

Comments

[Jan Hasak]

Thank you for this series of posts. It is important not to self-stigmatize. Sometimes we survivors do it without realizing it, wondering why our outlook on life is not improving. To heal, I chose to look beyond my own struggles and tend to those of others. That way I wouldn't focus on self.

[Jonnie Hickman]

When I was first diagnosed, I was over-whelmed with information. I went up to Mayo Clinic in MN by myself to do treatment.I had never had a patient with a blood cancer before. I felt confused and lost. My oncologist there suggested that I enter a house kind of like Ronald McDonald's house for kids. I said, "NO WAY!" I left MN with a death date after being there six weeks without that first treatment.

I did the same thing about joining a local support group. I didn't want to but so glad I did. I met some amazing people who were walking on a similar path. They invited me to Camp Bluebird and I said, "There is no way I am going out of town, with strangers to a camp to talk about cancer and be depressed." Boy was I wrong about these thoughts. Learned a lot. Met more wonderful people. It was a beautiful experience.

On the last day, they give an award to the Outstanding Camper. Everyone votes on the most friendly, most participation, most helpful and the most hopeful. They called my name 3 times before I realized they were saying my name.

For someone who 2 months earlier just wanting to die, I made an impact on some folks. I hung the award by my door so I would see what God wanted from me each time I went outside.

I'm betting that the Cancer House (my title for it) wasn't at all the way I pictured it. Didn't even give it a chance.

Bless you Dr Wendy!