When people mention the word “asthma,” they often think they know what they’re up against. You see the stereotypical “asthmatic” on TV as a “geek” (I won’t even go in to why that bothers me so much). Then add the word “brittle” to the equation — and believe me, I’ve seen it all.
I’ve been told countless times by people who “also have asthma” that they “know” how I feel. They say it can’t be that bad, but they don’t face challenges with it like I do. I’ve even had health professionals try and tell me my asthma is “routine.”
The truth is my asthma isn’t like most others.
My asthma is unpredictable. It’s limiting. I can go from being OK to having to go to the hospital within an hour. My asthma scarred my lungs, and I have to use oxygen to be able to function.
It means simple things like walking around my home, playing with my pets or even just sitting and typing on my laptop are extremely exhausting. I don’t work, not because I don’t want to (believe me, if I could I would), but because I can’t. I rely on people to help me on a daily basis with the simple things like washing, dressing and cooking meals. I have to take more than 50 tablets a day, nebulizers, inhalers and other medication regularly to keep myself going. This isn’t a typical life of a 29-year-old woman. But this is what I’ve had to deal with since I was 21 when all of this began to go bad.
Before my asthma turned into what it is today, I was just at the beginning of my adventures. I had just left home and moved into my own little place and was starting a degree in media studies, which would have set me up for my ultimate goal: to teach at my local college.
My home wasn’t much — room in a shared house in the attic — but it was the perfect place to watch a film, read a book or even get out a sketchpad and draw. I was happy. It was just me, my hamster and my guinea pig. We were a little family of our own.
But I didn’t expect to be wheelchair-bound by age 25 due to my asthma and a spinal problem I had since childhood called hereditary spastic paraplegia, which attacks the nerves in my spinal cord and makes them degenerate. I also had an old injury since I was a child that got worse as I got older. By 27, I would be using oxygen at home, along with nebulizers and other things. Back then, I was able to control my asthma with inhalers, but things happened and it became what it is now.
The problem is that a lot of people don’t really know what brittle asthma is. When people see me out and about in my chair, they tend to ask me what my illness is and why I am the way I am. I have to explain to them that unlike most people who can control asthma with inhalers, my asthma is a lot more aggressive and actively shuts down my lungs piece by piece. I then have the typical lecture that “(insert name here) has asthma, but it isn’t like that,” along with other clichés such as, “You’re much too young to be going through all that,” which, oddly enough, doesn’t make me feel better. It actually makes me feel as though my condition is being trivialized and I have to justify to yet more people (and myself) that what I am going through is real. It does hurt. It isn’t easy.
I want people to see what asthma really is. It’s a deadly disease, and it can become so severe that life is limited. You have to make the most of every day because you don’t know when that “last” attack is coming.
There have been times I have feared for my life and have nearly lost the fight. I’m not asking for sympathy or anything shallow like that. I just ask that people don’t judge what they think they know about me and get to know what is really going on here.
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Lead photo by Thinkstock Images
I want to show people what asthma really is. I want to break down the stereotypes of what people think asthma is all about and raise awareness about chronic brittle asthma. I'm tired of people underestimating asthma. I'm tired of having to explain myself to people who have no idea what this is really like. I want people to understand that they aren't less of a worthy person because of their condition.
wendy-jordan