When Your Chronically Ill Friend Doesn't Meet Your Expectations
Last year on my birthday I spent the nights partying and celebrating. Then I spent the days throwing up, fighting extreme fatigue, experiencing water faucet diarrhea and an overall general, “I’m miserable feeling.” And no, it was not just a hangover.
I bet you’re wondering, “Well, why did you keep going out if you got so sick?” Since I celebrated my birthday in the activities room of my hospital floor while I was waiting to die in 2015, I actively celebrate another year of life. Before I was diagnosed I planned to go to travel extensively for my birthday celebrations, but unfortunately that is not a reality for me anymore. Instead of condemning myself for health limitations, by way of suggestion and gifts, a Vegas fun weekend of staycation celebration happened. I’m a grad student so a free birthday celebration sounded marvelous. Not to mention, I believe I owed myself to honor the year I survived, honor the hell I had been through, honor another year of life I was blessed with.
But my birthday celebration details are not the focus of this particular article. Over the course of my birthday weekend I came to understand that people genuinely don’t think I am “that sick” because I don’t always physically look it. My birthday weekend is one of my more obvious examples of how I have come to adjust to living with chronic illness, but those who knew me before being diagnosed haven’t quite accepted the new Brittani.
I used to work at Sephora so I can still pull off flawless makeup. They haven’t accepted the new me because I dress well or keep myself neatly manicured. Because quite frankly I have an unyielding fight deep inside of me that refuses to be beaten. I’ve always maintained to never give up, and never surrender to anything or anyone worth fighting. So while I may be smiling on the outside, there are often times I am struggling greatly on the inside.
Call it pride, call it courage, call it whatever you like – but please try not to forget that I’m sick. By no stretch of the imagination do I want you to pity me or anyone else with an invisible chronic illness. We are among the lucky few who are “lifetime forever sick.” But I need you to understand – just because you’ve forgotten that I have a chronic illness, that I take more than 17 pills a day, I get weekly intravenous infusions of a immunosuppressive drug, I have a diet that consists of about 10 foods that don’t induce flares, that my weight has fluctuated this last year and that I have been intravenously fed nutrition to stay alive – I can never forget.
I will never have the luxury to forget that I am indeed “forever sick.” Even when I’m in remission and I have no flares, I still can never forget. Any moment, any food, any over strenuous or stressful situation could send me right back into a flare and/or right back into the hospital. Trust me, I want to forget at least once a day. I live with a certain amount of fear of my own body.
I heard a saying about autoimmune diseases that said something like “I’m so bad ass, only I could take me down.” While that sounds cool, it’s actually not. My body doesn’t know the difference between foreign invaders and healthy homies. It’s a terrifying feeling to think I can shit myself in public, throw up at while giving a presentation in class, or be so tired that I can’t get out of the bed during a flare to help myself. I freak out when my phone dies because I may not be able to call 911. I’m awake more than the average person so I have far more time to over analyze and plan for worst case scenarios.
I tell you all of this to say – do me a huge favor. If you know someone with a chronic illness, an invisible disease, autoimmune disease, or any type of sickness that you don’t readily understand, please take the time to do some research on it. Look it up. Listen to your friend or family member to see how this disease effects them individually. It’s different with everyone. However, there are basics you can learn to help you better interact with and comprehend their plight.
I was recently told by a friend of mine that “it wasn’t fair” that I was blaming a mutual friend of ours for stressing me out and making me sick. See the thing is, it’s not fair that a little or a lot of stress will make me sick. And, there’s not a damn thing I can do about it. I can mentally think I’m OK, but then my body betrays me and flare-ups. It’s not fair that they haven’t taken the time to truly understand what I go through and how stress, food, a long walk or a multitude of things really can drastically affect me differently moment-to-moment.
The comments don’t hurt my feelings, it’s the expectations people place on me to be “normal” because I look normal today. There are days when it takes every bone in my body, all the will I can muster, just to get out of the bed. Then if I manage to go to class, work or anything (besides go to the bathroom), I am proud of myself. I feel like I’ve conquered the world that day. Then there are days when I have flashes of the old me and I have energy for hours. Days where I’m preppy and genuinely smiling, not faking it and hardly feeling any pain. But everyday I, and millions of others, wake up prepared for either of those scenarios. I’m now flexible enough to know I may have planned something that may never happen.
It takes a toll on you mentally, emotionally, and physically. It’s hard, but it’s harder when the people you care about don’t take the time to understand this is my, our, reality. It’s not just dinner I’m late to, or class I miss. One day I could be late to my wedding or an important life event.
So just remember – while you may have forgotten that I’m allergic to this or that, that sometimes I hurt so bad even bed sheets hurt, that sometimes my bowel movements are like a broken water faucet that won’t shut off, that I’ve literally thrown up water for two weeks straight before…I will never forget. None of us can ever forget because it is our reality.
The next time someone you know or love with a chronic illness doesn’t fit into your perception of who they are, what they can or cannot do, take a moment to remember they have an illness that affects them differently at any given moment. Be patient and slow to frustration because your person will greatly appreciate it!
This blog was originally published on All Things Spoonie Essentials Box.
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