From the minute I wake up I know that it’s going to be a bad day. I had hoped for a good day but I know this pain all too well…
Imagine feeling like you have sharp knives stabbing your lower abdomen all day long, and then pouring alcohol in those open wounds. That gives you a good idea of what it feels like to be me for pretty much every day of my life.
I was diagnosed with Interstitial Cystitis when I was 24 years old, but suffered for many years prior to diagnosis. Interstitial cystitis is a chronic inflammation of the bladder. I’ve been told it’s basically that your bladder has no lining and without a lining when urine passes through your bladder it’s like acid burning your skin.
According to the Harvard Health Publications at Harvard Medical School, “the discomfort can be so excruciating and difficult to manage that only about half of people with the disorder work full time. Their quality of life, research suggests, resembles that of a person on kidney dialysis or suffering from chronic cancer pain. Not surprisingly, the condition is officially recognized as a disability. There’s no cure for Interstitial Cystitis, but many treatments offer some relief, either singly or in combination.”
They don’t know what causes Interstitial Cystitis, but it has been linked in some cases to pediatric urological/kidney issues. That’s me. I was a sick kid. Some of my earliest memories are vivid: the dark black face mask coming down on me lying on a cold table and fuzzy faces hovering over me, screaming for my mom when someone touched that catheter that seemed to be attached to my body more than it wasn’t. And needles, so many needles that my dad had to bribe me with a cat named Sweet Pea if I didn’t fight the needles. By the time I was 5, I had already had 7 surgeries. This year marked my 49th surgery.
I pride myself in having a high tolerance for pain and being able to live a pretty fantastic active life even with living in chronic pain. But honestly sometimes, like today, I hate it.
I hate my life, I hate my body and I hate that if I want to engage in normal physical activity I have to be willing to take the risk that my body will attack me a day or two later for daring to try to live fully.
I make deals with myself as a strategy, much like my dad did with me as a kid, as if I can will my body into health. I make deals with my doctor, like if I’m in pain for 30 straight days and can’t bring myself out of it, then I’ll have the surgery. He thinks it’s ridiculous that I find it acceptable to allow myself to be in pain for 30 straight days, but this seems perfectly reasonable.
Even with all of this, I know I’m one of the lucky ones. I’ve deployed successful life strategies that have allowed me to thrive in this world. I’ve worked for wonderful companies and bosses that have supported me and made allowances for the bad days. My dearest friends have taken me to my many surgeries, spent nights with me since my specialist is several hours away from home, suffered through the fact that anesthesia turns me into the Tasmanian devil which means I will NOT sleep for 24 hours after surgery no matter how many pain killers they give me, and my beloved friends that have dropped everything when they received a group text that I was hospitalized and had no way to get home. These people, my friends and family, are what make life bearable.
But there is so much darkness and isolation inside of living with chronic pain.
It’s difficult for even the people closest to me to really understand. I don’t look sick and most of the time I don’t act sick. I could be at practice with you or at the movies with you or in a show with you and my insides are screaming for the burning and stabbing pain to stop. Sometimes I can’t breathe the pain is so intense. I might mention in passing that I’m having a flare up but that’s it. You’ll never really know the reality of what’s happening to me.
Talking about living with a disease like this scares me. It makes me vulnerable and I don’t like vulnerable. I successfully implement life strategies to have people I love around me but keep them far enough away from the real me. Because in my darkest most isolated moments even I wish I could leave me. I don’t want to deal with crap that comes with living with this so I’ve never believed that anyone else would or could want to stick around for the long haul. It never occurred to me before but I think that’s why my cats are so very important to me. From one of those first childhood surgeries when my dad handed my own kitten to comfort me through the isolation, it seems that has been a successful strategy that has stuck with me my entire life. It’s hard for me to admit to myself that I hold a core belief that carrying this baggage makes me unlovable.
Tomorrow I will wake up happy. Tomorrow the pain will be bearable and I will revert back to my belief that I can overcome, achieve or be anything just because I will it to be. Tomorrow the sadness, despair and isolation will have faded into a distant memory. I will have my joy and hope back because I believe in living fully, in love and in gratitude every single day.
If you know someone that suffers from chronic pain please let them know you love and support them, even at their worst. Encourage them to speak about what they are going through and how you can help. Know that they understand that it’s hard and it makes no sense that they seem perfectly fine one day and the next they are unbearable to be around. While you are at it, give them a big hug or hold them on the couch and watch some TV. They aren’t going to tell you this is what they need but believe me when I tell you it is exactly what they need.