What My Invisible Disease Gave Me Eyes to See
We looked like any other couple. My husband and I.
There we were, sitting at a restaurant this past Valentine’s Day, just like millions of other couples. But we weren’t looking deeply into each other’s eyes. Or whispering sweet nothings across the table.
I was forcing myself to be there at all.
My reluctance had nothing to do with my sweet husband. No. I was in pain. But I was not going to surrender to my disease. It was not going to ruin yet another happy event in my life. Even if it meant I had to pretend to have a good time and cry most of the way home.
This unseen, unwelcome party crasher made its first appearance at the most vulnerable, joyful time in my life. I had just given birth to my first child. But I barely had time to hold my precious baby girl before the pain and torment began. In the same hospital room where I’d just been given one of my greatest gifts, an invisible thief known as Interstitial Cystitis began to take so much from me.
It was so invisible that doctors were convinced there was nothing wrong with me. No test revealed why I sometimes felt like there was a hot poker or shards of glass inside my bladder. No culture revealed why I could never rid myself of the constant urge to pee no matter how many times I went to the bathroom.
Before I finally got a diagnosis, one doctor recorded this in his notes (which I obtained when I left his care, after he implied I might just be a little crazy): “27-year-old female patient came in the office for an emergency appointment, although receptionist says she looked happy with her baby and was in no obvious signs of distress.”
I looked fine. But what he couldn’t see was that for the first time in my life, I was having thoughts of suicide. I didn’t entertain them long. I had a husband and a sweet little girl depending on me. But I suddenly understood with crystal clarity the anguish and hopelessness that would make someone believe it was the only way out. I’ve gone to that dark place a few times times but have always found enough hope and blessing not to stay there.
For years, because I looked fine, I minimized my pain. Some days I did (and do) feel fine. Then one day I stumbled upon these sobering facts: Approximately 50 percnt of IC patients can’t hold a full-time job. Many have a quality of life that “resembles that of a person on kidney dialysis or suffering from chronic cancer pain.”
Alrighty then. Maybe I’m not such a wimp after all.
Most won’t ever fully recognize or understand my pain and limitations. It’s been incredibly isolating at times. But over the last 18 years, this invisible illness has opened my eyes to some beautiful things…
I see my son, who battles with his own unseen illness, cystic fibrosis, through the lens of empathy. Instead of saying, “I’m so sorry for what you’re going through.” I can honestly tell him, “In my own way, I know what you’re going through.” Sweet son, I know how hard it is to carry a burden, to fight a fight that many others can’t fully appreciate. I see how solidarity in suffering has created an extraordinary mother-son bond.
I see a hard-won strength, steely determination and resolve in my spirit that I doubt I’d have developed in any other way.
I see the hidden pain in others’ eyes because I recognize it so clearly in my own.
I now see others unclouded by judgment because I understand that they may be fighting silent, unseen struggles of their own.
I see God’s hand and provision in the midst of my suffering. I don’t fully understand why He allows my pain, but I see how He gives me what I need each day to preserve and live well in spite of it.
I see the compassionate and tender hearts that invisible disease – mine and my son’s – has borne in my children. I see their sincere desire and tangible efforts to relieve others’ emotional and physical pain.
Yes, my invisible battle is often bitter. But what it’s given me eyes to see is truly sweet.
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