“Chronic Manageable Condition” Exerts Pressure To Be Optimistic

When I started in this work 16 years ago, there were few treatments and little hope. But people are resourceful thinkers, and alternatives to medicine were hot. Meditation groups, yoga, and the power of positive thinking were just a few things that were embraced. Having a life threatening illness that often meant a rapid death with little help from Western medicine challenged people to get their minds around these different approaches. For some it meant getting clean from drugs or alcohol, for others it meant looking at unhealthy relationships and deciding to leave them. Through these changes, there were people who came to the notion that “HIV was the best thing that ever happened to me.”  But there were also those who didn’t reap the perceived benefits of learning they had HIV.

Louise Hay’s thinking  was popular in those days. Louise Hay was writing about the connection between mind and body, implying that you could heal yourself from a disease like cancer. Not everyone read her books, but the ideas of her books floated in the air and took weight in conversations. People felt the possibility was there. 

“I hate Louise Hay,” spat a support worker one day as we debriefed.
“Why?”
“Because her philosophy of you can heal your life just adds to the guilt that PWAs have if they can’t.”

And he was spot on.  There were those who plunged further into drugs and alcohol, and lost any hope they’d ever have a healthy relationship because HIV would keep them trapped (abusive partners often helped reinforce this notion). And there were those who tried like mad  to heal their lives and got sick and died anyway.

I see echoes of that in this day and age of HIV being hailed as a “chronic manageable condition” for those who are on treatments (and not everyone is, but that’s another story). I’m not dissing treatment by any means, but it hasn’t made things manageable for everyone. I was grateful to see a recent blog by the smart and funny Dr. Bob to this effect. Dr Bob, himself HIV-pos and by his own admission very privileged, highlights some of the hefty challenges that HIV still brings, both physical and emotional.

How people speak of their illness can be influenced by language. I thought of this as I read Judy Segal’s piece in the Vancouver Sun about being a cancer survivor who wasn’t so sunny about her diagnosis. She wrote, “If, as a person with cancer, you violate the code of optimism, or if cancer somehow failed to improve you, you’d better be quiet. So I thought I’d better speak up.” She expresses a need to be honest about not feeling positive at times, and feeling pressured that she wasn’t keeping up the optimistic narrative that those diagnosed with cancer are supposed to have. It so made me think about those living with HIV.

“I reject a survivalism that seems to blame the breast-cancer dead for not trying hard enough,” wrote Segal.  An echo to my support worker friend’s lament that made me nod as I read and sipped my coffee. 

I’m with the optimists that say you can change your attitude about things and that in itself can change your overall health. Optimism is important. But it is one of many avenues a person might travel in a day when dealing with life changing diagnoses like HIV or cancer. A presumption that a person should always make the best of it is like putting a bearing rein on horses that holds their heads in place and can inhibit them from putting their heads down into hard work. It’s not the best support we can offer. The best support is to listen to what’s happening in the moment. 

-  Janet

This was posted on Friday, April 9th, 2010 at 9:00 am and is filed under Body Health, Education & Resources, Spiritual and Emotional Health, Support . Feel free to respond, or trackback. Read our comments policy.

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  Rico Gabbett April 11, 2010 at 1:27 pm

  Really nice writing.

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