I think -- in fact, I know because I've experienced this -- that the hardest part of having asthma -- aside from being short of breath -- is getting other people to understand your disease. I've been working on this my whole life, and seem to have made little progress.
My fellow Asthma Expert Kathi MacNaughton wrote a great post a while back titled "Ten Tips For Managing Asthma Long Term." Tip number six was as follows:
"Get your family involved! It will be easier for all of you to invest in a healthy lifestyle if you do it together. And everyone will benefit too... it's also important to involve your family in your asthma care too. Communication is the key. Tell them what you need and how they can help you. Help them to understand what it's like to live with asthma on a day to day basis.
I like this tip. No, I love this tip. Yet I find that's it's difficult, if not impossible, to get someone who is busy living a normal life to understand how you feel and cope with your disease. Seriously, I've been dealing with this my entire life.
It's not easy to get normally healthy people to understand that you're not lazy, you just can't cut the grass; You're not lazy, you just can't crawl into the attic to fix what needs fixing; You're not lazy, you just can't take your kids sliding in freezing temperatures; You're not lazy, you simply can't clean your closet, or under your bed, or your basement, because there's too much dust in those places.
It's not easy to get non asthmatics to have empathy for asthmatics, or at least I find this to be true when the asthmatic is not presently having an asthma attack. They simply believe that since you're not presently short of breath, you should be able to do all those things.
Last year I told my dad I will not be going back to hunting camp. My dad, the same dad who took me to the emergency room during the middle of the night so many times when I was a kid, and sat with me all night while I recovered from severe bouts of asthma, still keeps asking me, "So, what day are you going to camp?"
My brother, the same brother who watched me suffer, says to me, "You can sleep in the cabin, there's no allergens there." Um, yes there are. My other brother, who also watched me suffer when we were kids, lit the cigar that threw me into a fit of asthma. It's not that they don't care either, they just don't have asthma; they don't have allergies, at least not the way I do. They don't have to have asthma on their minds all day long.
Of course part of the problem is I have historically tried to be normal. I've always gone to hunting camp, even when I shouldn't, just to be one of the guys. When I was a kid I played football in the freezing rain, even during asthma attacks. I did this because I was the fourth player, and if I didn't play my brothers wouldn't be able to play either.
So I suppose that didn't help. We asthmatics just want to be normal. Yet we also want people to understand that there are certain things we cannot do because of our chronic disease. We deserve a little asthma empathy.
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