faking. While these questions are incredibly difficult, and can verge on insensitive, I always keep in mind that these people just donât understand the situation. Illness, or your particular illness, may be completely foreign to a lot of people. The only way they can understand is to discuss the medical condition with them, and often the understanding they gain comes in handy if your limitations are an issue in the future.
The other part I find most difficult to navigate are conflicts with my own radical politics and with the political community to which I belong. While I see my illness and treatment as further evidence that this countryâs medical and food systems are totally out of control, and have used it to inspire my politics, sometimes people who donât know me think that Iâm either not very political or less political because of my limitations. I have to explain to people that Iâm still âworking upâ to cycling, as I still have a hard time biking places with my asthma. Iâve had to break it to people that I canât eat whatever they found in a dumpster, and itâs hard to reveal that my messenger bag is full of supplements, digestive enzymes, asthma inhalers, and epi pens. It was particularly difficult for me as an anti-consumerist to rely on mass-produced products to stay healthy, but luckily withChinese medicine I have more natural alternatives. It bothers me that I donât have as much time, flexibility, or energy as some activists I know because Iâm already so worn out from taking care of myself, and I feel guilty about not being more involved. Also, I often have to justify my âdecisionâ to work an office job in order to afford healthy, hypoallergenic food, take care of myself, and remain insured. In reality, I feel so grateful that I even have the job that I have, as much as I still dream of a society where health care is not unjustly tied to the ability to work. Many people with chronic illnesses do not have this luxury.
I went through a phase of not telling anyone again just because I was sick of retelling the story, dealing with their disbelief, feeling like I was really different, and worrying about conflicts between sickness and politics. I was feeling better and just wanted to put it away for awhile. But itâs still a huge part of my life, something that requires accommodation, and a part of my radical politics, so I couldnât keep from talking about it for long.
So here I am now, telling everyone. As mentioned previously, while the process of coming out as sickly has often been difficult and painful, the moments when people finally get it make it worth it. While I still ask for as few accommodations as possible, being that kind of person, it secretly warms my frosty heart whenever someone says âI made these brownies soy, milk, and gluten free for you.â Perhaps more touching are the rare moments where I meet other people that are sickly too, or others with secret food allergies. It is always a moment of triumph, of pleasure in difficulty, when you meet someone who has gone through a similar level of hell. Having the understanding of people whoâve also worn hospital bracelets is invaluable. It is my hope that by telling my story, and having people tell theirs, we can begin a whole other process of healing. Chronic physical illness has mental, emotional, and social tolls that often take a sideline to whatever is wrong with our tangible bodies, so itâs essential to find support, self-respect, and a life worth living, regardless of ability or impairment.
RADICAL HEART SUPPORT
LAUREN DENITZIO
Today I started a month long US tour with my band. Weâve been together for over four years and have been a large part of what I do and what Iâm known for by most of my friends. Recently, I turned 25, quit the job I hated and now make a living doing graphic design and illustration, mostly for bands and record labels. I went
The other part I find most difficult to navigate are conflicts with my own radical politics and with the political community to which I belong. While I see my illness and treatment as further evidence that this countryâs medical and food systems are totally out of control, and have used it to inspire my politics, sometimes people who donât know me think that Iâm either not very political or less political because of my limitations. I have to explain to people that Iâm still âworking upâ to cycling, as I still have a hard time biking places with my asthma. Iâve had to break it to people that I canât eat whatever they found in a dumpster, and itâs hard to reveal that my messenger bag is full of supplements, digestive enzymes, asthma inhalers, and epi pens. It was particularly difficult for me as an anti-consumerist to rely on mass-produced products to stay healthy, but luckily withChinese medicine I have more natural alternatives. It bothers me that I donât have as much time, flexibility, or energy as some activists I know because Iâm already so worn out from taking care of myself, and I feel guilty about not being more involved. Also, I often have to justify my âdecisionâ to work an office job in order to afford healthy, hypoallergenic food, take care of myself, and remain insured. In reality, I feel so grateful that I even have the job that I have, as much as I still dream of a society where health care is not unjustly tied to the ability to work. Many people with chronic illnesses do not have this luxury.
I went through a phase of not telling anyone again just because I was sick of retelling the story, dealing with their disbelief, feeling like I was really different, and worrying about conflicts between sickness and politics. I was feeling better and just wanted to put it away for awhile. But itâs still a huge part of my life, something that requires accommodation, and a part of my radical politics, so I couldnât keep from talking about it for long.
So here I am now, telling everyone. As mentioned previously, while the process of coming out as sickly has often been difficult and painful, the moments when people finally get it make it worth it. While I still ask for as few accommodations as possible, being that kind of person, it secretly warms my frosty heart whenever someone says âI made these brownies soy, milk, and gluten free for you.â Perhaps more touching are the rare moments where I meet other people that are sickly too, or others with secret food allergies. It is always a moment of triumph, of pleasure in difficulty, when you meet someone who has gone through a similar level of hell. Having the understanding of people whoâve also worn hospital bracelets is invaluable. It is my hope that by telling my story, and having people tell theirs, we can begin a whole other process of healing. Chronic physical illness has mental, emotional, and social tolls that often take a sideline to whatever is wrong with our tangible bodies, so itâs essential to find support, self-respect, and a life worth living, regardless of ability or impairment.
RADICAL HEART SUPPORT
LAUREN DENITZIO
Today I started a month long US tour with my band. Weâve been together for over four years and have been a large part of what I do and what Iâm known for by most of my friends. Recently, I turned 25, quit the job I hated and now make a living doing graphic design and illustration, mostly for bands and record labels. I went
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