True Life: I have Chronic Illness
Almost 4 years ago I was diagnosed with interstitial cystitis. It all happened so fast. I’m still dealing with: “Why did this happen to me?” and “How do I live my life in peace?” Here’s my story and I hope it helps you learn a little more about chronic illness and one of the many that deal with it.
One day I was minding my own business, swimming in the ocean with my family (who had finally visited me in graduate school) and the next thing I know I was in such pain I couldn’t walk, I couldn’t think, and I really had to pee. But try as I might there was no pee and no release. Soon I couldn’t leave the bathroom I felt I had to go so badly though nothing was really coming out. My mom was worried and said it was probably a bladder infection and to call my doctor. I called and they sent in antibiotics.
As we waited for it to be filled we headed to dinner. Try as I might I couldn’t eat and I spent most of that meal in the bathroom in tears. After they finished we headed to the pharmacy but we didn’t get far. I couldn’t walk the two blocks to the car so I stopped in a gas station where I discovered I was now urinating blood.
So off to the hospital we went.
They ran tests but did a terrible job of things because all they did was set me up with more antibiotics and pain meds. After the 3 days they said it would take to clear up I was still in pain and I felt like I needed to pee 24/7. Fast forward 6 months I was still on various medications, I had been to numerous doctors and specialists until finally one Urologist found that I had full blown interstitial cystitis.
I was finally given the proper care I needed: medication and a new diet to help me manage my symptoms. I would never be cured, but I could get everything under control.
At first I was just happy to have the pain ease some and to better understand my body. Then my happiness changed into frustration. I was devastated I would always have to be vigilant to what I ate and drank, to keep my stress levels as even as possible, and to stay active to keep my pelvic floor muscles in working order. It was hard to see food I loved disappear from my life. Alcohol was no longer an option so wine Fridays had to be replaced with something else. Things I loved taken from me because I couldn’t pee.
I was depressed for sometime because how do you tell people you’re in pain but no one can see anything physical? I was embarrassed by all the times I got up from class to pee. I hated that I knew where every restroom was located at all my favorite spots. But the worse thing was how my intimate physical moments with my partner was no longer pleasurable.
I felt lost and alone.
After a few months of figuring it all out and learning new ways to be in the world, things actually got better. I found ways around painful sex (who says penetration is the only fun thing to do?) and I slowly reintroduced food that I loved back into my diet one at a time to find out what worked for me and what didn’t. I found that one glass of vino was enough to get the taste I loved, but getting over served was not for me and that was just fine. Things started to work out and by some crazy miracle, I found an Urologist that helped me get off medication so I only take it when I have a flare up.
I’m very lucky.
I am so grateful to my many doctors and my partner for being supportive and encouraging throughout this journey. I wouldn’t be in the place I’m in without them. It’s hard some days but I do my best to stay healthy and positive.
Even if you can’t see chronic illness it doesn’t mean it isn’t there. Individuals who fight everyday with chronic illness are not to be pitied–– they are to be celebrated for their strength and perseverance. Honored for how hard they work to stay positive in the face of adversity.