(This post was previously published on https://themighty.com/(
I attempt to turn my gritted teeth into a smile when someone asks me my least favorite question. “So what are you doing with your life?”
I can tell you what I would like to be doing. I’d love to be in school, living on my own, dating a lot, in the process of becoming a child life specialist and living the life of an average 21-year-old.
But my life is far from that.
My life is full of hospitals, medications, doctor appointments, debilitating fatigue, excruciating pain, swollen malfunctioning body parts, a paralyzed GI tract and trying to play peacekeeper in a body that’s broken out into a full-blown civil war.
When asked this question, “What are you doing with your life?” I typically force a smile and say, “Well, I’m still taking care of some things with my health… college is a lot of money. And I kind of want to be able to show up when I start college.”
Or if I’m feeling really sassy, I’ll say something along the lines of “Oh, just going through a personalized medical internship” or “Well… just trying not to die! So far I’m doing a really good job!”
But in all honesty, for the past three years, my health has been my job.
Each and every day I fight a wild (apparently almost impossible to diagnose) autoimmune disease that causes heart issues, lung issues, joint pain, swelling and hypermobility, GI tract paralysis and widespread bodily havoc.
Not to mention I have a rare type of soft tissue sarcoma (dermatofibrosarcomaprotuberans… a.k.a. DFSP) and two eye conditions, glaucoma and optic disk drusen, that have caused partial vision loss, plus a talent for growing unwanted, mostly benign tumors. Each day is honestly a struggle.
The thing I can count on every morning is that I will wake up in pain.
I know my body is betraying me. I know it will never stop betraying me. I know this disease, whatever it may be, could potentially be terminal. And I will most likely never be “healthy.”
Some days, those facts are an impossible pill to swallow.
Some days, I look in the mirror, and all I see is someone who feels extremely broken.
Some days, I feel utterly worthless. Like this illness has taken over my life. And there is nothing I can do to change that.
Some days, honestly, all I feel is fear.
But being a professional patient means I not only fight for my life, but for my quality of life.
I go to doctor appointments, endure thousands of tests, mountains of medications, dozens of procedures, millions of battles, hours in hospitals, bundles of stress, gallons of tears.
All in the hope that one day my illness will be managed, and I’ll be able to live as normal and hopefully as long of a life as someone with a chronic illness can.
I fight each and every day to choose happiness, to focus on the good in my medically challenged life and not let the mountain of things that are against me bring me down.
And when I respond to that awful question “What are you doing with your life?” and people nervously walk away or say something along the lines of “Well, you need to stop sitting around and do something with your life,” I wish I could show them how far I’ve come.
I wish they could see me when my weight was low and I had a feeding tube.
I wish they could sense everything I’ve learned and how much I have grown during this trial of health.
I wish they could see the strength I’ve gained from battles lost and won, and the warrior I’ve become.
I wish they could know my fight may hopefully get easier, but it will never be over.
I hope that one day I will be able to go to school to become a child life specialist. And live that somewhat normal life I dream of.
But for now, I am a “professional patient.”
The hours are: never-ending.
(Some of the) requirements:
– Must endure excruciating pain on a daily basis
– Must know the ability to digest is optional
– Must know swollen joints are mandatory
– Must learn how to administer dozens of medications
– Must learn the ins and outs of the medical insurance industry
– Must learn the ability to walk is optional
– Must learn the meanings of advanced medical terminology
– Must learn how to fight and advocate for yourself and to speak up, even when you disagree with someone who has an extensive medical degree
– Must be able to pull strength from nowhere and be able to move forward despite how broken you may feel
– Must endure hours upon hours of brutal medical testing, lifesaving surgeries and medical procedures
– Hospital stays are mandatory
– Needle pokes, infusions and medication side effects are an occupational hazard
Job perks:
– Develop an overwhelming sense of gratitude for what most people take for granted
– Develop an amazing amount of strength you never thought you could possess
Payment is: You get to live to see another day.
Through my journey, I’ve learned you don’t fully appreciate life until you have danced with death. I would never choose to be a “professional patient,” but what this illness has taught me and what it will continue to teach me is more valuable than anything you could put on a resume.
I’m determined to make the best out of my “personal medical internship.”
I’m determined to let this “job” change me for the better.
If you are in a similar situation as I am, never be ashamed of being a professional patient. Don’t let people convince you you’re “wasting your days.” Fighting for your life is the most worthwhile battle you could ever partake in.
You are a warrior. Remember that and smile on.
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