“What It Is Actually Like To Be Chronically Ill” by Chanel White

In this onslaught of popular media can you see past the facade of beautiful celebrities with their perfect hair, on point make-up and unscathed bodies during a hospital admission? Perhaps you look at those depictions of disease and believe it is an accurate portrayal. Let’s take a moment to step back from the illusions we are fed by society and familiarize ourselves with the true situations chronic illness sufferers face.

In the real world hospital admissions are not quickly staged over by the seasons changing outside a window, or time lapsed by a fade to black — they linger, and are mind-numbingly monotonous. You are vividly aware of every week, day, hour, minute and second spent stuck in that uncomfortable bed. Much of your stay is spent counting ceiling tiles, stalking your friends on Facebook or simply sleeping because you’re in too much agony to do anything else. There are not always gaggles of doting visitors in your room either; the reality is many people are too busy to drive miles out of their way for a visit to your hospital in another town.

After the first few weeks you are no longer an interesting commodity anyway, but a tired post on social media that people scroll right by. Your room is not quiet — loud beeps break through every hour as your many pumps finish a set of fluids, nurses enter in to take vitals every 15 minutes even during the night and you probably have a roommate that listens to the television much too loud. A private room is a hot commodity you are more than likely not going to get, sometimes you don’t even get a window. And you definitely can’t leave your room, let alone your bed, without an alarm going off alerting staff that you are not where you are supposed to be.

You are more than likely a disheveled, greasy mess; you sometimes don’t get to shower for many days at a time, and sponges baths really aren’t everything they are cut out to be. You wear the same clothes over and over, or have surrendered to the typical hospital garments because you probably didn’t expect to get admitted when you entered that ER. Your hair is matted and sweaty, you probably have remnants of smudged, old makeup caked into your skin, and you most definitely possess large bags under your eyes, bruised arms from blown IVs and an overall exhausted appearance from the loss of sleep.

The hospital is neither a perfect establishment where everything goes according to plan, nor run by perfect people exempt from making mistakes. The wrong medications get sent up to your room which delays your treatment, and the pump that was ordered for your tube feeds doesn’t correspond with the bags ordered so you have to wait another hour to get your nutrition. You may have just had an allergic reaction to the new medication you received and are now back at square one waiting for the doctor to prescribe another. With the way your luck is going your IV may have just blown for the eighth time since arrival and now you have to wait for IV therapy as well. You are miserable, lonely, in pain and wanting nothing more than to escape. Hospitals are in no way a peaceful place of healing like they are illustrated to be on television — and doctors are not always the caring, compassionate individuals you see represented. The reality is a far cry from the impression popular media depicts.

The days not spent withering in a hospital bed are not consumed by enjoying your “loads of free time” due to your inability to work a traditional nine to five job as believed by the general population. Your body is much too tired, exhausted and in pain to leave your house most days. You spend the majority of time on your couch watching Netflix and taking intermittent naps while hooked up to your home IV hydration, supplemental oxygen or continuous tube feeds — with the occasional trip 10 feet down the hall to throw up in the bathroom (but let’s be honest, sometimes you don’t make it to the bathroom).

You cuddle with your cat and stay wrapped in your blanket shivering even though it’s 90 degrees outside because your body can’t regulate your vitals correctly. You spend the remaining hours of the day navigating the complicated backstage workings of the patient health care industry, functioning as our own personal secretary: making phone calls, writing emails, completing loads of paperwork, and sending faxes. Insurance companies, billing departments, research facilities, state disability programs, physicians, RNs and care coordinators are just a few of the people you deal with on a daily basis. Chronic illness is a full time job with no pay, no vacation and no weekends. Every day is a sick day — but you still have to work.

This notion of “free time” doesn’t actually exist for the chronically ill. When not exhausted on the couch you’re in a waiting room at one of your eight appointments a week, getting tubes and needles shoved places they don’t belong, or sitting in an infusion room chair getting your chemo, iron, or saline infusions.

The rare occasions when you do decide to leave your humble abode for a coveted “non-illness-related activity” — it is anything but sunshine and rainbows. First off, putting on real pants can be a serious challenge when most of your days are spent in cozy pajamas. Then there is the fact that you must pack like you’re going off to war even for the shortest of tips… because anything could happen at Target! You’ll need a backpack full of the chronic illness necessities: a mini pharmacy, extra formula, emergency supplies in case your feeding tube or Port gets yanked, an extra oxygen tank if you want to stay out for an extended period of time, warm clothes in case the temperature drops, a list of all your current medications and physicians information, etc. When you finally get to your destination your so exhausted from all the prep you just endured to simply leave the house that you decide to bag the day out anyhow. Maybe you will try again tomorrow. wpid-fb_img_1422824445006.jpg

Note from Judi : This post affected me in so many ways. I cried, I empathized, I got angry, I felt like the author was writing about me. Her perseverance under the weight of her illness made me want to try harder to stay positive and #AlwaysKeepFighting! Thank you Chanel! Hugs for comfort and strength!

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