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What It's Like Living With a Chronic Illness

I have an autoimmune disorder. Living with a chronic illness means I spend money on medical bills and prescriptions while my friends are out buying concert tickets or hitting up bars. It means I don't drink, have a very limited diet and may find myself exhausted many days out of the week.

Living with a chronic illness means I have a weakened immune system. It means waiters roll their eyes when I ask what's in the salad dressing. Because I have to ask. One small slip-up, one trigger, can leave my body recovering for days. But I am not alone.

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The American Autoimmune Related Diseases Association states 50 million Americans suffer from autoimmune disease. "Genetics loads the gun and environment pulls the trigger." That means, if you are like me, you spend 25 years healthy, and suddenly find yourself deathly ill one day. Except that one day turns into a week, then months, then years. Living with a chronic illness means your treatment might take you two steps forward, then two steps back. It means you see many doctors. My tally (and counting) includes two nutritionists, an acupuncturist, an allergist, five endocrinologists, a rheumatologist, two naturopathic holistic doctors, a cardiologist and a chiropractor. 

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Living with a chronic illness means you get comments like "but you don't look sick" which sound like compliments, except they make your friends, and some doctors, take you less seriously. Your insides don't reflect your outsides.

It also means everyone will be offering you advice. "You should try acupuncture!" "You should do a cleanse!" "Go gluten free!"  I had a friend tell me they Googled my condition and it seemed easily treatable. Lucky me. Why had I not thought to Google my illness? What people who don't have a chronic illness can't seem to understand is that, by this point, you have tried everything. Aside from moving away to live with monks on a mountaintop, you are living the healthiest lifestyle you possibly can. You have to. You are desperate.

Living with a chronic illness means you will spend all your available finances trying to "cure" yourself.  You will also spend hours researching your bloodwork, getting second opinions, paying for hospital bills, then MRI's, then treatment. You lose money every time you go to a new doctor because your friend, or hair stylist, or coworker swears "they are the best!" You lose money when that doctor says "I'm so sorry I can't do more" and refers you to three other specialists who tell you the same thing.

Living with a chronic illness is expensive. It may involve humbling yourself, as I did, and asking friends and strangers for money. Congratulations. You have now become the sick friend.

Having a chronic illness means you sound like a whiny, complaining person. It means sometimes your friends stop reaching out. They get tired of hearing about it. And honestly, you get tired of hearing yourself talk about it. So you stop talking about it. You learn to live with it. Sometimes you even feel normal. But having a chronic illness means it's always around.

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But I'm not the only person living with an illness like this -- nor is this anywhere near the only type of condition that could be afflicting any person you see walking around on the street. That's kind of the point. These illnesses exist in many forms and can affect anyone around you. So I asked my friend and fellow Guff.com writer, Shawn Binder, to talk about his experiences with chronic illness as well:

Shawn Binder: I was nineteen years old and living alone for the first time in my adult life when a doctor read off his clipboard that I had Ulcerative Colitis. My friend rushed me to a clinic after I had vomited, then proceeded to black out in front of my campus' library. It was there I realized I had dropped 10 lbs in a month without ever even noticing. Ulcerative Colitis is a term I heard countless times over the next year; I was told that it was an autoimmune disease that you're born with. I was told that stress from school and lack of proper diet is what caused this dormant thing in my body to awaken and betray me. 

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For those who don't know someone with Ulcerative Colitis, it is when your body begins to recognize your own intestines as foreign, and attacks them as such. I was told that for the past few months my intestines had become severely inflamed, causing extreme weight loss and discomfort, and that if the inflammation did not stop the next step would be to surgically remove my intestines from my body.

The thing about living with a chronic illness is you constantly feel defeated by yourself. You're constantly thinking about the way your seemingly healthy body has betrayed you, and it makes you so angry you dig your fingernails into the palms of your hands.

The first few months after my diagnosis, I was put on steroids to shock my body (and illness) into remission. I gained back 20lbs by sitting in my dark apartment watching Gossip Girl reruns and gorging myself on Campbell's soup. My face was skeletal, then puffy, and I was emotional thinking that perhaps I would have to go through life with a bag of my own waste attached to me.

I blamed myself for something I couldn't have stopped even if I had known it was coming; and that helplessness breeds depression. Instead of talking to a doctor about my intense sadness, I saw a psychologist provided to me by my college. She asked me to rate my depression on a scale of 1-10, and not knowing what would warrant a 10, but feeling like I could cry at any moment, I heard myself whisper, "eight." She signed me a prescription for a hefty dose of antidepressants and sent me on my way.

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When my body finally did go into remission, the fall out was difficult to deal with. I now have to get a colonoscopy every two years to make sure my body isn't breeding deadly colon cancer that is often coupled with my condition. Each one of these procedures and doctor visits are costly, and the medications I have to take twice each day to save my life are not covered by most insurances. I have to pull friends aside and explain to them how quickly my condition can flare back up, like i'm letting them in on a terrible secret from my past.

Being a gay man, I always feel like I'm apologizing for my body. "I'm sorry I don't want to go out, my face looks bloated," or "I'm sorry we can't play tonight, my stomach is really hurting." To others, it feels like I'm a flake, or that I'm opting out of enjoyable things for the hell of it. But it's easier to let other people feel this way than to take on the exhausting task of explaining: no, this is my life now.

I often think of my life with a chronic illness in terms of binaries: the way I was before my diagnosis, and the way I am afterwards. I used to be able to play soccer for hours with my friends, but now I get tired after 30 minutes. It is easy to pity myself. I know I have to take it easy while everyone else my age is raging at clubs until 3am. And it's even easier to fall back into a pit of depression when I wake up with shooting pains in my stomach, wondering if this is the flare-up that will send me under the knife.

Talking to people about my chronic illness helps, it keeps it feeling omnipresent and real -- like talking about it will allow me to stay healthy long enough to do what I came into this world to do. I will occasionally hear from someone who has my same condition, and it's nice to feel like we're never alone in our experiences.

When you live with a chronic illness, life is a waiting game; we're always waiting for our bodies to betray us. All we can do is hope we are ready for when that day comes.

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