When You Have No Say Because of Interstitial Cystitis

My name is April.

When I was 21, I was hired at the greatest job. It was great money for my small town, and I loved it.

It was very hard work. I would work 10-12 hours a day, four to six days a week. The job requirements were intense. Lifting up to 150 pounds, walking 15-20 miles a day, and handling dangerous chemicals with no safety equipment.

Now, I’m 25, looking back, I realize just how hard that job was on my body, and I can’t help but wonder – was the great paycheck worth the exchange of my health? Now, four years later, I can honestly say “no.”

In 2014, just a year after being hired, I started having health problems. Fast forward to 2015, and I’ve been handed the sentence of interstitial cystitis.

If you’re unaware of what that is, It’s a chronic bladder pain illness that causes pelvic pain, and pressure. I experience urinary urgency and frequency, pain with intercourse, inability to sleep due to pain and waking to use the restroom, a special diet, a load of medication, and mental health issues like depression to boot. I was diagnosed at 23 and have been in pain every moment since.

Now that my back story is filled in, here’s what I really came to write about.

The hardest part about interstitial cystitis isn’t the 60 urinary void trips to the bathroom daily, or the pelvic pain so intense I can’t walk without a cane. It isn’t even the fact that I haven’t gotten a full night’s rest in years. It’s the grief, guilt, and agonizing loss I face every morning when I wake.

My chronic pain condition is a flare-based condition. It isn’t always a level 10 pain, but it never truly leaves me pain-free. If it’s not bladder and pelvic pain, it’s the heartache I feel from the death of who I was. I once walked miles in one day, now I’m parked on the couch. I once could run and ride a bike, and now I’m sitting jobless on my toilet or my couch. It’s so difficult to accept a new you when you had no choice. It wasn’t like a conscious “new year, new me” decision. The hardest part is that I’ve had no say, and now I’m stuck with just a shadow of my former glory.

But, There’s something to be said for people who feel the hopelessness, the pain, the exhaustion, and all the negative emotions those of us who feel consistent pain cycle through.

You’re strong. And not just because you keep fighting. No, it’s so much more than that. When you’re young and you’re sick, you don’t get to live the way other people your age do.

Just yesterday, I was crying on the couch in pain, while my my fiancee was upset at me for pushing myself.

He said, “Why do you push yourself and do things if you know it’s going to hurt you?”

My response was simple, “Because I want to be normal.”

To those of you who grieve constantly the loss of who you were, to those of you who think you’re worthless because you can’t work, walk, or go to get-togethers with friends and family – I see you. I know, and live your struggle and you are never alone.

You are strong. You’ve watched yourself fall completely apart, and you’re still here. You’re not worthless, you’re not nothing. You are a blessing to this world. You are all the beauty and grace of a survivor and everything that I strive to be.

You’ve lost your old self, but you’ve built a new one, a new normal – and you do that every day without quitting. I’m proud of you. Even if the only thing you did today was sit and breathe, I’m so proud of you for how you handle who you now are.

I know it’s hard sometimes to keep pushing through, I take comfort in crafts and I’ve recently started therapy. I’m learning how acceptance works. And so, I wrote this open letter. If any of you ever need someone to talk too, I’ve been on the edge of total uncertainty. I’ve been lost, I’ve felt ugly, I’ve convinced myself I am nothing, all because I got sick. But illness doesn’t define you. If you ever feel that way, know that I am always here. I will be your friend, your cheerleader. Whatever you need to build new hope. May you find peace, my chronic pain survivors.

I am truly proud of each and every one of you.

All my love from one chronic pain warrior to another.

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Gettyimage By: Sam Edwards