Saturday, January 03, 2015

It happened to me

I’ve had friends with Hermansky-Pudlak Syndrome, or other lung diseases, for 14 years now. Over the years friends that found themselves on oxygen have told me stories about overhearing comments in public, or even from other friends, about them. The comments were along the lines of - they’re on oxygen because they were a smoker.

Recently, it happened to me, not once but twice, in the same week. I’m not sure how to feel about it.

The first time was at the grocery store. I was standing in line, and a mother said to her 12ish looking daughter, “See that lady. That’s what happens if you smoke.” A week later I was in the car with friends complaining about my latest saga with the oxygen company. One of the friends remarked, “I’m glad I’m not a smoker.”

They are two very different comments with lots of different implications. The fact is, however, when many people see someone on oxygen, they often assume it is “their fault.” Living with chronic or life limiting illness is a minefield of guilt and judgment from others. The last thing any of us need, smokers or not, is more judgment and guilt heaped on an already difficult situation.

I find myself feeling a little self-righteous wanting to answer back – but I’ve NEVER smoked. Never even tried it! This wasn’t anyone’s fault. It has nothing to do with blame or threats or behavior. How dare you judge me when you have no idea what is going on with me medically! Does that make me just as judgmental as those making comments about me?

On the other hand, I’m all for encouraging people not to smoke. When I walk by someone smoking, I often wonder what they think when they look at me, cannula and all? Do they make a connection? Do they understand what life is like being tied to the leash of oxygen? Do they understand how it feels to not be able to get a breath? They’ve got healthy lungs and probably don’t have genes that will land them on oxygen at 41. Do they understand the risk they are taking, or the potential fallout?

Lastly, the comments upset me because of the wider implication they have for distribution of medical research dollars. Lung diseases of all kinds fall way behind research of other organ systems. We don’t have a little red dress campaign for the lungs. Everyone knows about the importance of cholesterol numbers, or blood pressure numbers, but when is the last time anyone not complaining of breathing trouble had a lung checkup? How many people know what PFTs (pulmonary function tests) are or what a good oxygen saturation number should be?

We did such a fantastic job with smoking cessation campaigns that in the process it feels to some like me that we’ve demonized lung disease in general. It feels like the movers and shakers of the world are somehow not moved to care about those with all kinds of lung diseases because, “that’s what happens when you smoke.” Those people somehow did it to themselves.

In reality, lung diseases, like any disease in the body, is so much more complicated than that. We all need just as much help unraveling the puzzles. We need to transition from anti-smoking to promoting good lung health awareness.

No comments: