Every day when I awake, my eyes flutter open and my skin begins to tingle. The sensation quickly spreads across my skin, heating up and intensifying into a prickling pain that often overwhelms. At times, I feel as though I’m covered with angry hornets that continue to sting not just the outer skin, but inside my nose, throat, mouth, chest, joints, and all mucus membranes.

Although I rarely speak about it, I live with Linear IgA, an extremely rare autoimmune disease that has always caused me pain, but was only diagnosed in my early twenties. Even as a child, I would often go out in sub-zero temperatures without clothing just to feel relief from the burning that I couldn’t explain, nor understand.

No one else I knew had pain from mosquito bites. Sure, mine would swell up and itch, but mine also burned. As for rough clothing and heat, it felt like torture. I did have hypersensitivity issues that were diagnosed, but many doctors, friends, and even family thought I was making up the intensity of the pain. It wasn’t visible, so it was all “in my head”, or I was “being dramatic”. As a child, how was I to know that the doctors were wrong? The disease was only discovered and defined in 1996.

When my skin suddenly began to randomly blister in my early twenties, I had no idea it was associated with the pain I had learned to live with. I went to countless dermatologists, each one doing a biopsy on some skin and sending it off to a laboratory, only to be told they had no idea. I wasn’t sure if it was contagious, so I wore long clothing, showered with gloves, and stayed inside when the blisters were visible on my face. My hair began falling out as blisters formed on my head, and I was dealing with mental health issues that were more dire than my pain. Suicidal depression, delusional manias, bipolar, OCD, ADHD, and Generalized Anxiety were drowning me, but, in many ways, also offering a respite from the pain and frustration of the unknown blisters that embarrassed me and made me feel alone.

Finally, after sitting in another medical office while waiting for yet one more dermatologist, a man with white hair that matched his coat and thick glasses walked in and introduced himself. I had another breakout and my shirt was off. Seeing my blisters, he leaned in and touched one. The gentle touch broke the blister open, startling him. I explained that after a few minutes, the liquid from the blister would solidify into an amber-like crystal. I will never forget his response: “Well, that is extremely strange.”

I had baffled every doctor that had seen me, so it wasn’t a surprise. Like the other doctors, he explained he was going to take a biopsy. He took two, sending one off to a lab and one off to a research university. Two weeks later I came back to see him.

“There is good and bad news,” he began. “We have a diagnosis. One of the first in Colorado…” He continued to explain that I had what was known as Linear IgA and that I would have to take a dangerous medication for the remainder of my life to keep the blisters from covering my body. Truth be told, just having a diagnosis was a relief, yet even once I began taking Dapsone, although the blisters faded, the pain persisted. The only way to get relief was with extreme cold, but that only worked on my skin. There was nothing I could do for a sore throat, eyes, nose, or my joints.

When I had blisters that people could see, many would show fear and sympathy. With the medication, my pain was once again questioned. I didn’t want attention, and I had already learned to live with unending pain, but I was also frustrated that what I was going through was not something others could understand. How was I supposed to explain that I couldn’t eat chips because the inside of my mouth and tongue burned? Or that I suddenly couldn’t walk up the stairs because my knees ached as if I was old and brittle?

The sad truth about people struggling with chronic pain is that many feel exactly as I did. Alone, frustrated, and doing their best to simply function. To this day I feel pain, but I no longer feel alone. I have also embraced the pain that I was always fearful of, as well as my bald head that came far too early for my liking.

My pain wasn’t going away, so I began working on retraining how I felt pain. Trying to enjoy it, trying to see if I could alter how my mind perceived and dealt with it. I also embraced a journey that I would most likely walk alone. It didn’t mean that others wouldn’t understand or love me, but the statistical chance of finding someone that fully understood was unlikely. However, I realized that wasn’t a weakness.

Standing strong through the suffering, rising above the pain to achieve, and becoming something great regardless of the hidden struggles I faced made me stronger. To stay positive when living in agony was something that I had faced with my mental struggles. In most ways, my mental suffering was much like the physical suffering that no one could see. Many doubted, didn’t understand, and some even accused me of lying, so I simply stopped talking about it.

The problem with remaining silent is that it perpetuates the unheard screams of others. The only true way we can share and enhance compassion and empathy is through sharing, speaking, and open dialogue that rises above fear or stigma. There are many out there, right at this very moment, who are suffering in silence; hiding their pain and struggles behind a smile that belies the burning within.

I never wanted sympathy, or to be seen as my pain. Most people dealing with chronic pain don’t want sympathy, but they do want understanding and faith. The only time I was ever truly frustrated was when I shared my soul and it was returned with doubt and dismissal. This goes for all unseen suffering, both mental and physical.

If you see someone, even someone laughing, always be open to their words and show kindness. We all hide many of our darkest moments, and we shouldn’t. If we can learn to open our minds and hearts to all, choosing love, compassion, and kindness first, I truly believe there is no limit to the world of bliss we can all build together. 

Love and light to all.

~Kirk Patrick Miller 

@Chaos2Cured (IG/Twitter/CH)

Mr. Kirk Patrick Miller is a professional speaker, mental health advocate, and radio personality. His book “Chaos to Cured” and his contact information can be found at www.chaos2cured.com.

———————— Disclaimer ———————
Mr. Kirk Patrick Miller is not licensed to practice medicine. His opinions are not meant or intended as mental health advice or guidance of any kind. Should you need help, please reach out to a mental health professional. If it’s an emergency, please call 911. (Suicide hotline: 1-800-273-8255)