The Cost of Doubt, Disbelief, and Dismissal of Invisible Illnesses

Like most of us with autoimmunity I experience periods of flare-ups and periods of time at "my normal." Despite traveling across the country for a conference I've had the pleasure of living within "my normal" for some time now. What I forget when I travel is how much my home life at work and play I've adapted around my joint stiffness, fatigue, and pain reduction. The accommodations at the conference were amazing, the seating was some of the most comfortable I've sat in at conferences, but it still wasn't my own environment. 

I was on my my absolute best pain management behavior. To counter the stiffness of sitting for long hours at the different sessions I walked long routes through the hotel and surrounding area, I took the stairs when I could,  and I stretched and stretched while waiting for sessions to begin. I was really careful with my diet, staying away from known inflammatory foods (mostly sugar, but for me also MSG and a couple others). I practiced biological self-management skills during the 5 hour flight there, each morning and each night: voluntary muscle release, immersive visualization, passive sensory attention of the hands, and some autogenic cooling of my feet. It made my flight tolerable and I was pretty happily functional afterwards. 

The hour that I am choosing to focus on for this blog isn't necessarily about my pain or pain mastery, but one that reminds me of the battle we have with recognition of invisible illness.  It was the end of the second day at the conference for American Academy of Pain Management.  My back was on fire from sitting in conferences all day, my neck kinked, my trapezium in spasm, my ankles swollen, my knuckles swollen and stiff, my hips, shoulders, and clavicle/manubrium joints starting to add to the sensory cacophony. The speaker was presenting the apparently required stats on the epidemic numbers of us with chronic pain. Then a man next to me, a professional who chose to come to learn about pain at this conference, leans over and says with a doubting smirk, "Look around the room. Can you really believe that 1/3 of us in this room have chronic pain?" 

I stare blankly at him for a moment. He doubts the existence of us. He doubts the statisticians. He doubts the incredibly important IOM report that sounded the alarm on the numbers with chronic pain. As we sit here, side by side, he doesn't know it, but he doubts me. He can't see what is happening to the person right next to him. I am not not his patient, I offer no threat to his liability, yet he dismisses the reports of pain. He assumes I am in agreement with his doubt. Assuredly, he has had many people jump on the "pain patient" doubting bandwagon. After all, it is still the cultural norm.  Many of us even internalize this cultural norm and judge or doubt ourselves at different times in our pain experience. 

The pause continued, my mind calculates the risk/benefit of outing myself and my pain. It holds back in the freeze response as fight and flight are not accessible at the moment. Ultimately, I decide that he will not benefit from learning that I have chronic pain and, of course, I believe the stats. I also only stand to risk more directed stigma from him. In the moment my heart was racing. He has no idea of the turmoil his statement just caused. All I wanted to do was shake him and yell at him to open his eyes, we are here, all around him, warriors fighting a private war, who need his compassion, not his ignorance or judgment. But those words don't come to me in that moment. Instead when my words do come to me I find a simple example that illustrates the stat and even points out some of his ignorance, "Well, by the numbers of people testing out all the exhibitors' gadgets and asking each other for advice with their own pain, I'd say that it's higher and really closer to half of us here have pain. Ya know because helping others with pain helps you handle your own pain better." Not eloquent, witty, or concise, but the message was received and acknowledged with a sheepish, "Oh, you're probably right."

The fight, flight, or freeze response took awhile to calm as my mind reviewed the interaction. And with my body experiencing an onslaught of stress chemicals, the pain intensity rose. 

It never ceases to amaze me how moments like these are so common, so hurtful, and so easily dismissed as irrelevant in the pain experience. I argue that these moments and the stigma of chronic pain can be the most critical in the chronic pain experience.  They can undermine self-care, lead to flare-ups, alter one's sense of self, and cause and/or augment depression. Yes, I've got skills. Yes, I could calm my nervous system arousal. Yes, others can learn to do that too. But it is not the recipient of discrimination and bias who needs to change. It is society that needs to change. Societal change is necessary to slow down the growth rates of chronic pain. If our society continues to disparage, dismiss, and disbelieve the desperation and depth of pain individuals face then we fail. What will it take to change the attitude and stigma about pain? When will there be enough of us yelling loudly enough, to no longer feel invisible with an invisible illness?