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Why I Struggle to Be a 'Fighter' in My Life With Ulcerative Colitis

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There are days when I feel fine. I feel that life is good, and that I will achieve what I want to.

But most days, I feel like all of the things I was fighting for were no longer part of my destiny the day I became chronically ill.

When I was 16 years old, I became sick with ulcerative colitis (UC). I also have autism spectrum disorder (ASD), which was a barrier to navigating efficient treatment.

I was terrified of all the tests and treatments — even down to getting a blood test. Never mind shoving a camera up my butt!

As a 16-year-old closeted queer kid with autism, I experienced extreme hang-ups over the littlest of things and had an overbearing, abusive mother who made me hate my body.

I wasn’t just the kid who wore a shirt in the pool — I was the kid who wore a hat and a hoodie to bed for seven years of my life.

I hated myself, and I hated my life. I felt like every day was a struggle for survival in a world that wasn’t built for me, and that was before this illness came into my life.

And yet when I got ulcerative colitis, I decided it was time to fight to have a good life.

I realized that I deserved to escape. I wanted to escape the constant pressure to be someone who I wasn’t. Escape from living under the thumb of an abusive and manipulative parent who never wanted the best for me. Escape from all of the pressure I felt. I wanted to find somewhere I could be myself and figure out who I was.

I deserved to experience a life that wasn’t filled with abuse. I deserved to experience a life where I felt happy, loved, and safe.

I went through five months of desensitization therapy with a fantastic psychologist, but she couldn’t help me.

By this stage, I was so sick that I couldn’t even stand. I struggled to eat, all my muscles were gone, and my top lip had pulled up. I wasn’t healthy.

I had to tap on the floor with a stick for someone to bring me water, and I had to crawl to the bathroom. Every bowel movement left me thinking, “This is it — I’m actually going to die this time.”

I had a blood test and colonoscopy done under general anesthesia on September 6, 2011, a couple of months after my seventeenth birthday. I woke up, was sent home, and just two hours after I got home, an ambulance arrived to rush me back to the hospital.

My blood test results came back shockingly poor. My doctors stressed that they wouldn’t expect someone with blood test results like mine to even be alive.

I can’t claim to know much about blood results, but I remember my hemoglobin was 3.8, my potassium was 2.0, and a lot of the other values were unrecordable. Those were what they were most shocked about — especially since I’d come off of a general anesthetic just a few hours previously.

I was then faced with the reality that I wasn’t going home.

I had to submit myself to my absolute greatest fears — letting these strangers touch me in places I didn’t want to be touched and put things in my body that I did not want in me. I had to see it all because they kept me awake too. If I wanted to live, there was no other choice but to comply. I did all of this because I thought I would have a happier life afterwards.

I still look back on those days full of sadness and trauma. I will never forget the struggle I went through for two years of recovery — a struggle I still bear the scars of today. Every time I see my PICC line scar, I’m brought back to that hospital and reminded of all the wires, the steroids, the bags of blood, and the fear and agony.

Every time I see my left thigh, the deep stretch marks remind me of how it swelled to three times the size of my right calf, and how when I elevated it, I’d walk around like the Michelin Man.

The acne scars on my face remind me of the lasting effects my medication had on my body — cystic acne all over my back and face.

In the winter, my knees, wrists, and elbows remind me that it’s super important to take my calcium tablets. I now feel like an 80-year-old trapped in a 27-year-old’s body.

I went through treatment for my UC because I was promised that I would have a “good life” with this illness, but that hasn’t happened for me.

I escaped one life of abuse, and now I live in another one.

I’m no longer in my home city because as a disabled person, I can’t afford to live there.

The city I do live in doesn’t understand or address my health care needs. I’ve now been two years without my medication and am ill as a result. No one makes accommodations for my autism, and I have no assistance with managing my care. This type of help is inaccessible to me.

I never got to finish high school, and because I’ve just been trying to survive since I was 19, the only jobs I can get are jobs in call centers. I feel like I am being abused and exploited for a living.

I haven’t gotten to enjoy anything in years. I haven’t been allowed to feel safe in my entire life. I have been homeless more than once, and I fear that if it happens one more time, nobody is going to care anymore.

I have no community. I have no support network.

All I want to do with my life is help others through charity work, but this often requires having lots of experience volunteering, which is hard because I give all of my energy to my job. I’m exhausted literally all the time, and stress makes me feel super sick a lot of the time too, which leaves me unable to feel secure in my job — despite always producing great results.

I will say this, though: It’s been over a decade since my health struggles began, and I’m still alive. From the time I was 9 years old, I haven’t wanted to live, and yet almost two decades later, I’m here writing this story.

I’m not much of a fighter, but when it comes to this journey, I’ve kept going. I know I’ve come far, and I know there is a long way to go. I just need to remain hopeful that someone out there will see the determination that got me through those dark days and see that I want to use this drive to help others in dark situations too.

I’m writing this because I know there are people out there who may relate to how I feel — whether they’re going through UC or any other illness that can cause a similar brush with death. I understand feeling unsatisfied with life and the impact an illness may carry.

Know that you’re not alone. Know that I’m with you, and you don’t have to settle for this being the end of your story. Keep going.

Getty image by SolStock.

Originally published: April 5, 2022
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