At the end of one of my rheumatology appointments, my doctor, who spends every day seeing children with rheumatic conditions, gave me the most heartbreaking look of pity.
She said I will need many doctors but just not her right now. This was not how I pictured the appointment where my joints were finally doing well to go.
In my head I figured if I ever got to a point where I could go a full year without seeing a rheumatologist it would be a happy occasion. This had been the appointment I’d been waiting for, and my joints behaved as I wanted them to. Yet the look the doctor gave me at the end is what’s ingrained in my memory.
Yes, I am sick. No, I don’t enjoy getting about 95 percent of my nutrition through a tube. Yes, I wish I could reliably stay vertical whenever I please. Yes, I do miss gluten sometimes.
Here’s the thing though — even though I wish my health was different, if changing it meant I risked changing other aspects of my life, I would keep everything the same.
My life is pretty darn good.
I’m a college student who loves my major. I’m working toward my dreams and getting closer every day. Unlike many of my friends who spend hours looking for jobs to no avail, I practically fell into two jobs, both of which I love. One job I would have never gotten if it was not for being diagnosed with celiac disease during my freshman year.
On top of work, I’m part of a couple amazing student organizations that give me leadership roles and the opportunity to help others. Best of all, I have the most awesome people I know as friends who always pick me up when I fall down (some of whom I met because of my horrible health).
I may not have my health but I have so much more. My life is better than many people I know who are completely healthy. That is why you should not pity me, because my life is pretty amazing.
A version of this post originally appeared on Life With a Flare.
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Joan is a 20-year-old junior at Temple University. She is studying early childhood education and special education with the aspirations of becoming a special education teacher. Throughout high school and college, Joan has struggled with multiple chronic illnesses and relies on a feeding tube and IV fluids for the majority of her nutrition. She blogs about her challenges at lifewithaflare.blogspot.com.
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