Chronic Snarkopoloist: The Art of Disclosing Chronic Illness
After years of living with chronic illness many of us have developed an art to knowing just when and how to discuss it. Some of us have learned with whom we discuss and who gets our fiercest ZILCHO discussion.
Whether our illness is invisible or completely obvious, our daily life is MORE than illness. We are more than our illness, which means that what we talk about should also be more than illness. Of course it comes up, and THAT is the art.
A friend was running 10 miles per day after going into remission from breast cancer. People were asking her where she had been the previous year since the running group had been started for an entire year. In her small town everyone knew about it. She no longer LOOKS like a cancer survivor. Yet cancer is part of her STORY. As she jogged along she said simply, “Last year I was dealing with cancer.” NO ONE said anything back. And most people stopped running with her in the group. She still carries this stigma of being somehow wrong or imperfect, not because she was sick, but because she TALKED about it publically.
What was she to do? They asked. In this case, she did the exact right thing. However, because she was running with people, what would it look like if she said, “I was rocking out some cancer so I could come back and run stronger and kick more ass.” Who knows? I often wait for opportunities to bring up illness with people I don’t know well. When they ask me point blank I usually make light of even the most horrific acts – not for MY COMFORT but for theirs.
Does this make me a liar? YES. IT. DOES. Does this reduce the impact of illness in our cultural conversation? YES. IT. DOES.
But sick scares people. It reminds them of bad times. It reminds them of their own mortality. We have all watched people die and FEW if any people have a good head on being a caretaker or being a good patient or sick person, let alone being a “healthy normal person” and having a good head wrapped around illness. I have always tried to grease the wheels for others when it comes to the conversation.
And I still fail. All the time I fail and discussing illness. I misjudge what others can tolerate. And I misjudge what I discuss or withhold of my own story. Disclosing illness is an art. I’m always perfecting and tweaking it for my specific audience. I have since I was a child. I have learned that “take me or leave me” doesn’t take into consideration what OTHERS need to understand or filter through a massive amount of health issues. They don’t know what it is like to drive oneself to dozens of MRI’s or get chronically diagnosed. They don’t know what it is like to lose husbands and friends and mourn and grieve over illness.
And frankly- it overwhelms me. It overwhelms US. How can we not put ourselves in their shoes and not try to sweeten it and soften it just slightly for others just a bit so they can hear our story. I try to make mine funny because I come at things with humor. Just last night I got a taste of what the “typical” experience might be. A woman who had a BOUT (meaning two weeks) of kidney issues and one CT scan. She freaked out, had a friend go with her and worried about cancer. She told a horrific tale of crying because she watched her mother die of cancer. So she was worried she might also get it.
She knows I am ill. I don’t talk about it but I don’t hide it. Occasionally it comes up because we knit together and we’ll discuss things I research or what I’m writing. Sometimes I’ll have to cancel because of a doctor appointment or I don’t feel well. She is extremely accommodating. I’ve never told her my “official diagnoses” though. Why? Because it simply doesn’t come up. She’s OK with having me in her life. And I’m OK with a friend who loves me and accommodates my schedule.
And yes, sadly- I’ve lost dates or friends because I’ve mentioned my illness or talked about it too much. Or because I was having a bad day and needed to compress. And sometimes I DO. Sometimes even just mentioning that I have an autoimmune issue or that I’m chronically ill or that I deal with ongoing health issues is enough to make people run for the hills. AND IT HURTS EVERY TIME. It does. It does and I have never found a way to inoculate myself from the pain other than to remind myself that I only want people who can handle it in my life – that way I’m not investing myself in people who CANNOT handle me.
I’d love to hear your strategies. I’d love to know how you measure the environment and know when and how to discuss your health versus keep quiet. As a long time advocate FOR OTHERS, I often seem to clam up and do a less than good job for myself, glossing over and being overly-stoic for myself. How do YOU handle it? What are your techniques? Is there an art to disclosing chronic illness? What do you think? Tell me! I must know!
I’ll be back same time next week! Kiss kiss!
Tags: chronic conditions column, chronic illness blog, Chronic illness forum, Chronic Snarkopolist, Chronic Snarkopoloist: The Art of Disclosing Chronic Illness, coming out of the chronic illness closet, Dear Thyroid chronic illness support, how to discuss chronic illness, sharing chronic illness with friends and family, written by Melissa Travis, years of living with chronic illness