Many people know of my questioning of the status quo of disease rhetoric. Probably these same people all roll their eyes when they sense another rhetoric post coming. I continue to challenge the words we choose for ourselves and for others because words, beautifully crafted or unintentionally regurgitated, matter. Changing words are often either the first step or the first sign of changing attitudes.
This week in one of the Facebook groups I am a part of, someone posted a story about a man diagnosed with stage 4 cancer who chose to hike from Mexico to Canada on the Pacific Crest Trail. The story itself was a beautiful tear jerker that ended with his death - a death that he knew was coming regardless of what he did with his time left.
What really moved me, however, were the comments on the post. You see, this was not posted in a "support group" - it was posted in a closed group devoted to long-distance hiking. Therefore, some of the comments by those with unique health situations were obviously made without much premeditation, uncensored for a crowd that obviously shouldn't take any comments about illness personally.
One of the commenters, a woman who could directly relate to the man featured in the story because of her own long-term cancer diagnosis, said, "Choosing to live a normal life was the key to my survival. I didn't go to support groups - they sat around whining about their conditions. I didn't want to immerse myself in what I call the 'cancer culture.' I just wanted to live a normal life. And I have, for 35 years since my diagnosis."
This comment really got me thinking. Are support groups helpful? Ultimately, I think it depends on the person, and I have seen some people be completely lifted up by support groups. (The key word in such uplifting groups is, indeed, "support.") But a lot of times, these groups can turn into a sort of misery-loves-company kind of atmosphere, with people lamenting hardship (and these lamentations tend to be either contagious or competitive).
We dismiss those who keep themselves outside of these support groups, whispering words of judgment and throwing around phrases like "unhealthy denial."
It is a tricky balance. We need human interaction, support, and empathy directed our way. But to turn everything into a hardship is pretty dreary. Sometimes when I share, I internally recoil when others turn my experience into a hardship that I'm not, in fact, experiencing. What do I have to gain by seeing a learning experience as hardship?
I don't want to hurt anyone who relies on support groups for comfort. (Edit: or INFORMATION! I am entirely grateful for information I have learned through coming together with others.) It is very healthy to seek out support, and I am enormously grateful that such groups exist. I only want to gently encourage balance and perspective within these groups and also stress that what we see as "denial" may, in fact, not always be unhealthy. (Disclaimer: I don't consider "I don't really have an illness and therefore I don't need to take medicine" to be healthy denial. Realistic denial is understanding that when you are doing everything you can to stay healthy, you don't have to conform to someone's preconceived notions of who you should be.)
Something a friend and I were recently talking about was the use of the phrase "cystinosis patient" to refer to individuals with cystinosis. It's a tricky one, because people with cystinosis are generally followed by one or more physicians and have regular blood tests and medical appointments. On the other hand, so do lots of people who we don't refer to as "patients." My last overnight hospital stay was 15 and a half years ago, in August of 1999. My husband had a more recent overnight stay (also years ago), but I don't refer to him as a patient. Doctors and nurses did - while he was in the hospital. Is it helpful or damaging to automatically label people with cystinosis as patients? Does this phrase have a redundant eternal quality to it? (By that I mean, your cystinosis lasts a lifetime. Why suggest a lifetime of hospital stays as well?) Do we accept the patient mentality without questioning?
When you grow up with a rare disease, you are often exposed to your own exceptionalism. Sometimes I think the rhetoric reflects a desire to hold on to that, and we desperately apply it to entire communities in hopes that the suffering will stick, that people will notice our struggles and salute us. The truth is our communities are so varied, and while it has become (rightfully) wrong to apply universal stereotypes such as "black people can dance" and "Asians are good at math," it is still perfectly acceptable to say that "cystinosis patients suffer with ___________."
I will never deny you your suffering. That is yours to have, though I wish I could take it all away. But let's carefully consider how we apply words to an entire, albeit small, population.
I am hardly alone or original in these thoughts. For a great resource on people-first, positive language, see http://www.asha.org/publications/journals/submissions/person_first.htm. Notice that the first word listed under Principle Four is, in fact, patient.