Pain and Me: Defining the Relationship

Pain is a part of life. For me and an estimated 50 million people in the United States, it’s part of daily life.

I’ve been in chronic pain since age 13. Its onset was likely due to a variety of factors, including a bad acute hepatic porphyria (AHP) attack that accompanied puberty. Even though it affected me every day, I didn’t really understand my agony. For a long time I was scared of it. I fought to rid my body of the hurt, and when that didn’t work, I targeted the most affected areas and numbed them out.

This Pain Awareness Month, I’ve been thinking about my evolving relationship with chronic pain. Pain and I have a long, rocky history. We used to fight all the time.

Pain has been a constant companion in my life for 24 years. Recently, I’ve gotten curious about my pain and the accompanying parts of my body I’d exiled long ago. I’m trying something new these days, and turning toward the discomfort. It doesn’t change the fact that I’m in pain, but it impacts how I think about it. Chronic pain is an inevitable part of my life, but suffering through it is a choice.

A painful truth

Living in chronic pain affected every facet of my life, from professional to personal. It affected the decisions I made growing up and the career I pursued when I got older. It robbed me of sleep and my enjoyment of hobbies. It affected how I showed up in the world, and how I loved and supported others. Over time, daily pain chipped away at my confidence and my self-worth, leaving me an anxious, desperate shell.

During porphyria flares and attacks, acute pain in my abdomen and limbs rocks my world. My day-to-day chronic pain is primarily located in my upper back, shoulders, and neck. It was once widely believed that AHP symptoms occurred only during attacks. However, recent studies suggest it’s not uncommon for patients with frequent attacks to experience chronic symptoms.

For those of us with chronic porphyria symptoms and other painful invisible illnesses, we face stigma, judgment, and discrimination. I lost count of providers who’ve allowed their preconceived notions about pain to affect my treatment plan, or the number of loved ones who’ve told me I don’t look sick.

A painful fight

Pain is personal and tolerance varies. To live is to experience pain, and perhaps that’s why it’s so widely misunderstood. I recently wrote about society’s aversion to pain and how the wellness community cashes in. I bought what they were selling for a long time because I was brainwashed into thinking my body was defective.

I also aggressively pursued treatments. I saw countless practitioners with various specialties for my back pain. Each of them told me I could be “fixed,” that if I followed their plan I would be “healed.”

Going from provider to provider, I hooked my body up to machines, I forced it into positions and movement. I wanted the deepest soft tissue work, the longest yoga routines, and the most challenging strengthening exercises. I purchased countless contraptions for my neck, as well as supplements and creams that all promised relief.

To be clear, nothing was inherently wrong with these treatments. It was the way I approached them. I had a deep well of animosity for my body, this overwhelming urge to feel good because I thought that’s what I deserved. And if I didn’t feel good, there was something wrong with me.

A painful acceptance

I emerged from battle years later, burnt out and suspect of medial providers. Through fighting my body, I also picked up my top two favorite coping mechanisms of all time:

1. hiding my pain with posture and stylish outfits, and
2. shunning the areas of my body experiencing the most pain.

While not remotely healthy, both helped me survive until I finally received my AHP diagnosis in 2017.

Learning I had porphyria profoundly impacted my relationship with pain because it stripped away layers of shame and neutralized the fight. It helped me get to a place where I could begin to rebuild trust with medical providers, and explore pain management better tailored to my illness. I still don’t really understand my pain, but I am finding ways for it to peacefully co-exist with me by using mindful self-compassion.

In many ways I’m privileged to have a diagnosis; so many others living in chronic pain do not. If you have chronic pain, you know what it’s like to live in a world where ableist microagressions are pervasive and people are entitled to feeling great all the time. You may also know what it’s like to be at war with your body. I don’t know about you, but I’m tired of fighting.

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Note: Porphyria News 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 Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.