This post discusses my experience with chronic pain and having an invisible illness. It’s my goal to expose flaws in the treatment system, increase awareness about invisible illnesses, and offer hope to chronic pain patients. How you present your narrative matters when it comes to regaining control of your life.

Estimated Reading Time: 14 minutes

When people grimace or stare at the scar that now runs across my throat, it doesn’t bother me in the slightest. The mark was made with exquisite surgical precision; it stretches approximately 5 mm — pink and slightly raised in its freshness. It is the first visual representation of what I have endured for the last four years and the only physical sign that my illness exists outside of my brain.

Unfortunately, people (including many medical professionals) often need such glaring physical evidence to believe in an individual’s reality. This makes having an invisible illness a grueling, isolating, and often crippling reality even in a time of so many medical advances. But one helpful thread that has woven itself through my quest for recovery is narrative.

How one copes with their pain can be shaped by the story they tell. In my experience, the ability to receive help for chronic pain is (unfairly) affected by the voracity and effectiveness with which one can convey their concealed reality to others. This doesn’t involve lying, manipulation, or exaggeration, but rather telling a truth in a way that forces others not to ignore it. So here is the story of how I achieved help for my chronic pain.

Chronic Pain & Invisible Illnesses Can Be A Nightmare To Diagnose  

The first time I can remember the gnawing teeth of what would become chronic pain was after I cracked my head open on July 11, 2019. A strange feeling started to bloom in my head and jaw, one that would only spread like a drop of ink in water. Over the years as I moved from the United States to Germany, my pain would stretch from my jaw to my head to my shoulders to my arms until it encompassed the entire right side of my body. I was then left like a prisoner in my own skin, with half of it feeling compressed and inflamed at what gradually became every moment of my life after no doctor knew what to do with me.

As many chronic pain patients are aware, when a doctor hears hooves, they are trained to see a horse. Therefore, when a zebra walks in, they are not prepared to recognize such a creature, let alone handle it. In real life, there is no Dr. House or team of medical professionals who will work tirelessly through the night to figure out your diagnosis and set you on the path to healing. In fact, it can be next to impossible to get anyone to even take your symptoms seriously in the first place. So when I found myself experiencing life-altering symptoms along with neurological disturbances, I was terrified when there weren’t any answers.

My time spent visiting doctors became a part-time job before I reached any answers. Here’s a quick glimpse: at the end of 2022, I counted that in addition to a week in the hospital, I had a total of 101 doctor appointments that year on top of work and language courses. In some ways, it is a privilege as an American to see so many doctors in a country with universal healthcare. However, many people don’t realize that the majority of the doctors simply brought me back each quarter to swipe my health insurance card for a quarterly visit.

It has been next to impossible to see doctors when it does not financially benefit their practice. Meanwhile, appointments take an average of 3 to 7 months to make. When I finally saw these doctors, I almost always had my concerns dismissed as me being stressed. I was advised to drink more water, relax, and do yoga despite clear signs of a neurological illness. It even took me 7 months to receive a follow-up appointment with a neurologist once I was also diagnosed with chronic migraines after a week in the neurology clinic following an ER trip and a concerning MRI scan.

Related: Medical Gaslighting & Healthcare Stigmatization

While I had hoped for a healthier 2023, I spent a week in the hospital at the start of the year and then stopped counting the dozens of appointments that followed. In addition to the sheer volume of various doctors I visited over the past three years, I spent countless hours researching what to do when I was left with dead end after dead end. This process truly gnawed at my burning bones. Why did it take almost four years for me to be diagnosed with something that could finally be treated? But more importantly, why did so few people take me seriously along the way?

Self-Advocacy Is Vital With Invisible Illnesses & Chronic Pain

Before I arrive at my eventual treatment, I want to consider how I have been treated while seeking help. The first thing I can tell you about receiving chronic pain care is that nobody is likely to help you if you don’t demand it. The second thing is that there probably is no cure, but there is a threshold of bearability to aim for achieving. I have raged against the dying of the light with all the ferocity in my bones, which has both benefited and crippled me over the years.

In many ways, I was in denial about being sick, and I didn’t want to accept that I had a potentially lifelong ailment that wouldn’t be diagnosed and couldn’t be cured. But in other ways, I was dead certain that there was an area of my body that was specifically wrong and needed to be addressed even though doctors insisted it was healthy. So I threw myself into trying every treatment and researching every possibility for lasting relief.

I have files and lists and binders chronicling every medical visit, new idea, medication, failed treatment, doctor, and hour of research I have dedicated myself to as I tried to pinpoint the root of my suffering. It wasn’t that I was entirely neglected by the doctors, as they ran preliminary tests and ordered the usual exams. I also was provided available treatments to try and alleviate pain, as well as medications, though I was persistent in asking for these options after doing independent research.

Doctors didn’t really start to dismiss me until I showed healthy labs. They then became visibly frustrated when I kept returning, and their help ran dry when I failed to find relief the conventional way. Additionally, I was shocked by the number of people who wanted me to simply accept my condition without understanding what was wrong with me. Because the thing was, I did not feel healthy, and I didn’t know what to do when I was in such severe pain that I wanted to be hospitalized and doctors were telling me to drink more water and do more sport. Why didn’t anyone want to dig deeper to figure out my condition? Why had everyone given up seemingly before getting started?

Sometimes the treatment of chronic pain patients by medical professionals is shocking.

I’m not quite sure what’s worse — being denied help or not being believed. One neurologist told me two years ago he knew exactly what was wrong with me, but he refused to help me because he thought I was seeing too many doctors. (Of course, I was seeing too many doctors, because I couldn’t keep waiting four months to be dismissed by everybody without a backup plan!) He declared too many cooks spoiled the soup, and he wouldn’t treat me. A different neurologist told me that I needed to look within myself and discover what I had done to make myself so sick. She told me that there was nothing wrong with me and I needed to simply relax. (Have I tried yoga?)

After having the vitality drained from my burning limbs following an infusion treatment in the summer of 2023, I realized I finally needed to see a neurosurgeon. I wanted a dramatic change, be that a spinal implant or a nerve block. But in Germany, there is a process for everything. To see such a specialist doctor, I needed my primary care doctor to write me paperwork. However, my care doctor refused the request, citing that I couldn’t have referrals just because I wanted them. (She previously refused to allow me to see a rheumatologist.)

The doctor who consulted at my work agreed that I needed to see a neurosurgeon due to my symptoms, which were getting rapidly worse, as I was losing the ability to use my right arm and was left in crippling daily pain. My primary care doctor had my work doctor write her a note recommending that I urgently see a neurosurgeon. She then wrote him back that I was a chronic pain patient, and that I shouldn’t be allowed to see any more doctors because there was nothing wrong with me. She refused my request in definitive terms, as well as to other people.

Not only was the experience humiliating, but it was potentially extremely dangerous if I hadn’t been fighting so fiercely for myself. With no help from my primary care doctor, I found an orthopedic doctor who finally wrote me the paperwork to see a neurosurgeon. The neurosurgeon ordered a cervical spine MRI. A year earlier in September 2022, I had visited my parents in the United States, and we paid out-of-pocket to have a cervical spine MRI that had not been able to offer diagnostic proof of an ailment at the time. These scans could now be compared. At long last, I was finally getting somewhere.

This is how I finally received concrete help for my chronic pain.

Everything changed from the moment the radiologist interpreted my cervical spine MRI results in 2023. He told me that I had clear signs of spinal degeneration, which had significantly worsened in the past year compared to the MRI scan that I had paid for out-of-pocket a year earlier. He said the exact words that I had been pleading for months — I needed to see a neurosurgeon as soon as possible. Suddenly, every doctor that I saw went slack-faced when they read my new paperwork and told me that I must see a neurosurgeon. My pain had become real to them at last. (The whole experience would have been almost comical if it hadn’t been so exhausting.)

After sending my paperwork to a neurosurgeon where I live, I was informed that appointments were made based on the urgency of the findings. I had an appointment scheduled within a week and a half, and my surgery was planned for less than two weeks later. I now wear my scar in triumph, as I know with certainty that the defect in my spine that was pressing on my nerve would never have been discovered if I had trusted the doctors and just drank water and done more sport- which by the way was damaging to my condition. Only through my own research and persistence did I obtain the two spinal MRIs and arrive at a diagnosis.

We Need To Change Our Perception About Chronic Pain & Invisible Illnesses

When it comes to invisible illnesses and chronic pain, I try to have understanding from all sides. I can see things from a medical perspective, and I understand that many doctors are overwhelmed with patients. When they dedicate too much time to helping just one, they are unable to see multiple other people who could be easily treated. But where does that leave people in my position? What are we supposed to do when we do not have something that is easily diagnosable? It is simply untenable to tell us to return to our lives as normal in such crippling pain. And I have a hard time imagining that doctors would offer the same advice to their spouses or children.

There is also a very limited perception of what pain is supposed to look like. For example, I enjoy doing my hair and make-up. But, if I put on make-up or get dressed nicely, it’s like the validity of my pain suddenly evaporates. Doctors read my chart, look at my face, and tell me I am too young to be suffering — and I know people in my life think the same thing. And it doesn’t matter how calmly and rationally I explain my feelings on the matter, it is always chalked up to stress, imagination, neurosis, or hysteria.

Unfortunately, women are more likely to have their medical issues dismissed as opposed to men. A 2022 article from The Washington Post reports that men in chronic pain are thought of as “stoic,” while women are more likely to be branded “hysterical” and “emotional” and be accused of “fabricating” their issues. Men tend to be believed more than women when they say they are in pain, while they are also more likely to be offered medical treatments as opposed to suggestions of therapy or relaxation. There’s no doubt that this, as well as being foreign, has made my chronic pain journey more difficult.

Chronic Pain Has Racial & Ethnical Treatment Differences
The National Library of Medicine also explored how racial and ethnic differences affected how patients with pain not related to cancer are treated. “The burden of pain is unequal across racial and ethnic groups. In addition to racial and ethnic differences in the experience of pain, there are racial and ethnic disparities in the assessment and treatment of pain,” the abstract states. 

It’s long been established that people of color do not receive the same level of care when it comes to having their pain taken seriously and having it treated. “Racial and ethnic minority patients have worse pain expectations which may influence pain treatment disparities. However, there is evidence that expectations are malleable and may serve as a good target for intervention,” the institution reports. 

Chronic pain patients also need to evaluate how they view themselves. 

Additionally, the perception of how someone with chronic pain views themselves needs to be adjusted. To me, this has been the hardest part. I spent months and years thinking about all the things that I used to do that I could no longer do or that I could only do with tremendous pain. I missed the ease and vitality of my life and the ability to engage in a careless adventure without the imminent reality of the pain that would grip me in a vice-like lock when I tried to ignore it. I fought tooth and nail to avoid accepting my new reality and the condition that I will likely always be in to some extent, as chronic pain can be mitigated, but will likely never entirely disappear. But there is also peace to be found in acceptance.

When you have chronic pain, you truly cannot keep looking back. Once you accept this, there will be a point where you can see old photos and not feel sadness; instead, you can experience pride and happiness for what you once had. Without this mindset, the constant contrast of what once was — the omnipresent measurement of loss — is engulfing. It is simply not a sustainable way to live. Instead, one must realize that things are different, but that there are steps that can be taken to make the new world bearable. There is no other way around it. They are the same steps that need to be taken in all forms of grieving.

On the other hand, life is not a Hallmark movie. Chronic pain is also an isolating and ugly experience. Invisible illnesses can cause people to withdraw, because those around them do not understand. The suffering one experiences from being in a constant state of physical pain is crushing not only for the body but also for the soul and spirit. It can make people unpleasant to be around, as well as burdensome to manage. But that doesn’t mean that there isn’t life to be lived for people with chronic pain.

Chronic Pain & Invisible Illnesses: Is There Hope?

At the end of the day, the brutal truth is that there is no guarantee that chronic pain will ever go away in its entirety. But it most certainly can get better. After all, it appeared one day. There is no saying that one day it will not leave. Meanwhile, medical advances are occurring daily, such as a topical form of ketamine that is being developed and might provide much-needed relief to chronic pain patients who are medication-resistant. The struggles of today could soon be eradicated thanks to science.

Until then, it is necessary to have hope. Hope is especially needed when one is suffering in every moment. Hope could mean believing in the next doctor appointment, believing in a future medical advancement, or simply looking forward to something in the days and weeks ahead. Hope means believing a future exists and that this future hurts less. It’s also vital to take into account what one has at the moment and value everything that still exists because mindset does matter. Which brings me to something I touched upon at the start…

Storytelling plays a role in chronic pain management.

Perception is a powerful thing. When we reposition and reassess how we view things, our plights can become more bearable even if the burden doesn’t lighten. We can see aspects of life worth cherishing despite them standing amidst a backdrop of a far more grim reality. Through reframing our narratives, we can gain the strength to continue despite being saddled with a seemingly unbearable burden. Lastly, it’s an unfortunate reality, but one must utilize the best storytelling practices when seeking help. Unfortunately, how you deliver your truth matters even to doctors.

When it comes to my fight against chronic pain, the biggest line, I repeat in my head is to rage against the dying of the light. I knew something was wrong with my spine, and if I hadn’t bought tooth and nail to get it diagnosed and treated, it would continue to degenerate at a rapid rate and press upon my nerve even more. If it wasn’t for my voracity — if I just had some water and listened to the advice of the doctors — I would be in a far worse position. Though time was needed to uncover the extent of my damage, I refused to ignore my voice, because I am the one writing my story.

At the same time, there is a beauty in Sisyphus accepting his fate. It’s not that he wants to be rolling the boulder, it’s that he can make peace in those moments of understanding. Somehow, we can get up each day and continue to roll the rock even if we might go to bed every night feeling impossibly exhausted. It is in the moments in between — those breaths of clarity, the flicker of a smile — that life can make sense even in an ironic way. My pain might linger in my body forever because it has been so long imprinted, but I choose to believe that there are days ahead in which I can stretch my fingers to the sun and feel the burning on my skin rather than inside of it.

“Some people, when they have taken too much and have been driven beyond the point of endurance, simply crumple and give up. There are others, though they are not many, who will for some reason always be unconquerable. You meet them in time of war and also in time of peace. They have an indomitable spirit and nothing, neither pain nor torture nor threat of death, will cause them to give up.”

Roald Dahl, from the short story “The Swan”

Continued Reading: What To Know About Invisible Illnesses