The Long Road Through Chronic Pain: A Journey of Learning, Laughter, and Living

Navigating life with chronic pain is akin to taking a road trip without a map in a car that unpredictably decides to break down while also somehow managing to enjoy the scenic views. It’s complex, frustrating, and yet undeniably a journey of profound self-discovery. With a dash of humor, a wealth of experience (thanks to 25 years of medical hide-and-seek), and a heart full of stories, let’s dive into the world of chronic illness management, self-advocacy, and the relentless pursuit of health in a system that often feels like it’s playing a different game.

The Diagnosis Dilemma: More Twists Than a Soap Opera

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Imagine asking for pain relief and being handed an anxiety diagnosis instead. Sounds like a plot twist you didn’t see coming? Or does it sound all too familiar? Welcome to the world of chronic pain, where the plot twists are as abundant as the misdiagnoses. This isn’t just a storyline; it’s the reality for many, including yours truly, who, at a tender age(teen years), faced the dismissive attitudes of healthcare providers. Whether it’s age, gender, or a simple lack of understanding, the journey to a correct diagnosis is often long and winding.

The first time I asked for pain relief, I was 13. They called it growing pains and bad periods, and they gave me birth control. This went on for another 2 years; by this time, puberty hit me like a Mac truck, and my body was in agony. I twisted my ankles daily, my knees were killing me, my lower back felt like I had been beaten, my hip joints snapped every step, and I struggled with near-daily debilitating headaches and periods that seemed like someone was turning on a blood faucet that only stopped 2 days out of the month. I was prescribed ibuprofen and new birth control. Told I was anemic and to take iron supplements and given Wellbutrin for “Anxiety.” 

A month later, I cut myself for the first time. I had to quit the Wellbutrin; it made my situation so much darker. This started a 20-year cycle of misdiagnosis and dismissals. Ultimately, medical negligence has left me with a lifetime of scars, mental and physical.

The real kicker? My mother’s struggle with opioid addiction added another layer of complexity to seeking pain relief. It’s like walking a tightrope between managing pain and avoiding the specter of addiction. Enter the world of Ehlers-Danlos Syndrome – a guest who arrived uninvited but decided to stay, bringing along friends like MCAS, POTS, and Reynauds for the party. They did not introduce themselves until I was 35, but they certainly changed the atmosphere and furniture of the room from day one. 

The Quest for Relief: Navigating the Healthcare Maze

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If chronic pain is the quest, then the healthcare system is the labyrinth designed by a trickster god. It’s no secret that the United States scores embarrassingly low on healthcare quality among developed nations. The journey involves:

• Dodging the minotaurs of misdiagnosis.
• Leaping over the chasms of insurance limitations.
• Deciphering the riddles of medical jargon – all without a Daedalus to guide us.

Seeking alternative pain management becomes a quest in its own right. In the past, my journey looked like Tramadol on rare occasions, physical therapy sessions that felt more like medieval torture, and the dance with various therapies – swimming, yoga, massage therapy, you name it. The discovery of low-dose naltrexone was like finding an oasis in a desert, a reminder that sometimes, the answers lie where we least expect them.

LDN(Low-dose naltrexone) is a vastly misunderstood medication. Many doctors and nurses still only think of it as an addiction treatment. There is so much stigma. I have to preface every medication discussion at the beginning of every appointment with “It is not for addiction; it’s for 3 reasons: pain managment, ADHD, and Weight Loss; it acts like Contrave, which is Naltrexone and Wellbutrin.” If I don’t, the providers get really judgy. You would think they would be supportive of people with an addiction getting off drugs and booze, but having gotten a sampling, they need to reconsider working in medicine. 

I now have two knowledgeable physical therapists who actually listen, and I am making incredible gains in therapy. I have found that so long as I stay on top of my exercises, I live in low to no pain. If I miss three days of PT exercises, that is all it takes for the back pain and hip locking to return. The combination of services, therapies, and medications I am on has improved my life significantly. 

Can I work? No, unfortunately I am unable to work most jobs. The POTS means I am a liability. ADHD makes me forgetful and lose track of time. Autism means I am terrible at the social aspects required by most American companies. I am looking into remote jobs for European businesses since I hear they are embracing remote work. 

If I had a college degree, I could probably do a desk job of some type. I know I wish I could get a graphic design degree specializing in 3d rendering. Unfortunately, as long as I live in the United States, that dream will never happen due to the excessive cost of education here. I want to work. That is why I started this blog. To have something that is mine, a job of some kind, to express myself, to have an identity separate from “Wife and Mom.” 

Self-advocacy in healthcare is like being the protagonist in an epic saga, where the quest is for knowledge, and the dragons are patronizing healthcare providers. Equip yourself with the armor of research, the shield of informed questions, and the sword of perseverance. Sites like HealthGrades become your scouts and phrases like “with all due respect, I disagree” become your spells of protection.

Throughout history, the label of hysteria has been unjustly attributed to women, dismissing their physical and psychological distress as mere overreactions. Thus, the use of the term Hysterical to describe any woman expressing dissatisfaction, upset, or even rightful anger. This perspective, deeply rooted in misogyny, has obscured the genuine suffering and trauma behind such symptoms. The concept of hysteria, historically linked to the notion of a “wandering uterus,” found its peak in 19th-century studies at Paris’s Salpêtrière Hospital. Women enduring unexplained medical symptoms, often stemming from various traumas and intimate violence, were diagnosed as hysterical. 

Notably, pioneers like Pierre Janet and Sigmund Freud initially linked hysteria to psychological trauma and sexual abuse, respectively. However, Freud later retracted his stance, attributing these accounts to fantasies rather than actual abuse, which significantly influenced the dismissal of women’s experiences. This legacy continues to impact how women’s complaints are perceived, often minimizing or denying their pain and attributing it to emotional excess rather than legitimate concerns. ¹

Despite advancements in trauma science revealing symptoms of “hysteria” as a response to trauma, society still tends to marginalize valid trauma and violence as a minor issue, overlooking its widespread consequences. Recognizing the historical mistreatment of women under the guise of hysteria is crucial for addressing and preventing domestic violence today, highlighting the importance of collective action and understanding to foster a more empathetic and just society.

Interestingly, today’s diagnoses of “Anxiety” mirror the historical accusations of “Hysteria” strikingly closely. It appears that despite the evolution of time, the essence of seemingly intentional or not, misunderstanding remains constant. Asserting oneself against the subtle undermining in healthcare isn’t just an act of courage; it’s an imperative strategy for safeguarding one’s well-being. And take heed, a physician’s reluctance to respect your self-informed stance is not merely a caution; it signifies a multitude of warnings and red flags. The more red flags a provider has, the faster you need to get out of there. ²

Ah, the Spoon Theory – our way of explaining the energy budgeting that chronic illness requires. I will always be grateful to Christine Miserandino for sharing her essay. Finding your tribe within the spoonie community can be a game-changer. It’s a place where your experiences are validated, where your struggles are understood, and where your small victories are celebrated. It’s about finding camaraderie in the chaos, a sense of belonging that reminds you, you’re not alone. Not every spoonie community is good for your mental health; make sure to search for one that uplifts when you are down. One that does not encourage and play into drama, misinformation, pseudo-science, and fake news. 

Sorry, Linda, your essential oils are NOT going to cure my genetic disorder. No, Melanie, your all-organic vegan diet is not going to fix my MCAS, and I will not be adding it to my resources page. Stop asking. 

Embrace the Journey: Laughter, Learning, and Living

At the end of the day, living with chronic pain is about embracing the journey – the good, the bad, and the downright absurd. It’s about finding humor in the hospital gowns that never close properly, learning to listen to the wisdom of your own body, and living life in a way that honors both your challenges and your strengths.

And for those moments when the path feels too steep, remember the words of wisdom from fellow travelers who’ve navigated this road before: take deep breaths, practice comprehensive self-care, and lean into the spoonie community. After all, in the grand adventure of life, it’s the fellow travelers who make the journey worthwhile.

So, to all my chronic pain warriors, my advice to you is simple: embrace your inner baddie, wield your knowledge like a sword, and march on. The world is vast, the battles many, but within you lies the strength of centuries, the wisdom of experience, and the power to thrive.

Remember, this journey is yours. While the road may be rough, it’s also ripe with the possibility for growth, discovery, and laughter. Keep moving forward, one step, one breath, one day at a time.

DjinniWhispers

• July 2024
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