Pain Is Invisible, but It’s Not Invalid
Living with chronic pain has become common, but never easy, for a columnist
The pain scale has never made sense to me. It’s probably because I can’t remember a time when I haven’t been in pain. For all the different types I’ve experienced, none are evident in my appearance or demeanor. This adds to the complexities of my life with chronic pain.
Throughout my journey with cystic fibrosis (CF) and now five years after a double-lung transplant, I’ve experienced a great deal of pain. I’ve had to learn how to live alongside pain rather than reacting from that place of agony. Pain has taught me to be grateful for temporary moments of relief. It’s also given me empathy for those who live with it in various capacities.
Before my transplant, I had intense lung pain. Yes, it’s a real thing. When a respiratory infection was raging in my CF lungs, I could feel physical pain where I was most congested. As I coughed to clear the mucus, the explosive hacking tore apart my ribs, shoulders, and every connected muscle. It wracked my entire body and flooded me with unbearable pain.
After my transplant surgery, the magnitude of pain I felt was unimaginable. It took my breath away. Between the place they sawed my chest in half and stapled it back together and the resulting chest tubes, I could barely stand up. I remember closing my eyes, praying so hard for relief, and waiting for the wave of lightning pain to pass. Those moments when I had a little reprieve felt like magic.
Physical therapy after transplant caused muscles I didn’t know I had to ache. The hospital deconditioned me quickly, even though I was in strong shape going into surgery. I had to strengthen my leg and gluteus muscles. I learned how to strengthen my arms without disrupting the healing of my incision. And building back my stamina felt like a constant marathon while powering through the pain.
Currently, I live with constant headaches. Doctors still don’t know the origin because several parts of me aren’t functioning as they should. Perhaps it’s from the three times I’ve had blood clots preventing proper blood flow. Maybe it’s side effects of the medication I take daily. Furthermore, it could be persistent sinusitis that my double-lung transplant didn’t fix. The possibilities are endless.
The problem with pain is that it’s invisible. When I say I’m in pain, others typically respond with “but you look great.” It’s not any consolation that I don’t look like I’m in pain; it actually invalidates what I’m dealing with. Nobody can see the pain laced throughout my entire body on a daily basis. It’s easy to make assumptions that I feel great because I “look great.” Looks can be deceiving, especially when it comes to chronic pain and all that my body has endured and continues to endure.
The truth is that I’m used to functioning in pain, so it doesn’t faze me. And I’m not the type of person to sit on the couch wallowing when I’m in any kind of pain. I continue living my life despite my continual discomfort.
Mental or emotional pain is also invisible. Nobody knows that I’m depressed when I’m smiling. People can’t see that I’m anxious when I look “fine.” Others don’t notice when I’m frozen, panicked, or reliving traumatic memories triggered by any given situation. And people definitely don’t see when I’m struggling to manage the complex emotions that go along with chronic illness or pain.
The answer is complicated when medical professionals ask me to compare my pain with the worst pain I’ve ever felt. Well, nothing is as painful as my transplant surgery, so am I really in pain? Does it count?
Pain Awareness Month, which ends today, has reminded me that even though my pain is not evident to others, it’s still valid. In a world that seeks validity through appearance, pain says otherwise. The battle is raging inside while others are almost always blissfully unaware. And the pain I feel isn’t imaginary; it’s real.
I don’t have to convince my friends who have been through similar health crises that I’m in pain.
It’s illustrating my experience to those who will never walk in my shoes that is painstaking. And those conversations are exhausting.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.