the chronicHealing is a matter of time, but it is sometimes also a matter of opportunity. - Hippocrates
I had avoided this moment, my great reveal. I thought that if I was given enough time I wouldn’t need it. I could just gloss over the last few decades of disease to a concise “I’m cured.” The influence of ableism made me feel that I could only speak about my illness if it wasn’t my reality anymore. Due to the perfect combination of genetics, environmental triggers, and several infections, I’ve developed a seemingly endless list of health conditions that are unrelenting, enigmatic, and significantly disabling. Equal parts of internalized ableism and illness kept me quiet for many years despite having much to share. I was wrong to assume my experience wasn’t valid and my silence was most valuable. Silence doesn’t criticize, question, or demand change. Agency requires a voice. The injustices and abuses I faced are not deserving of my own shame, but are the failings of larger systems at play that I now feel responsible to speak upon.
Becoming sick takes a multitude of mechanisms. It can feel like an orchestration of catastrophes. To unravel it, one must think in the same magnitude of its construction. I’ve heard healing is like peeling the layers off an onion. It’s more like reverse engineering an intricate tapestry while blindfolded. Often the bulk of this burden lies on the patient alone.
Medical neglect is common due to a lack of knowledgeable healthcare providers and medical dogma that’s saturated with gender and racial bias. Stigmas surrounding marginalized health issues normalize mistreatment and dismissal of patients in society and medical communities alike. Early detection, prevention, accurate diagnosis, and treatment are all forms of validation and can be life saving. They also determine a person’s access to resources and care. Without those, a patient will be neglected and often abused.
When I fell ill, I was deemed lazy, depressed, and delusional rather than in need of support or medical intervention. My femininity was misconstrued as hysteria, my intelligence as malingering, and my smiles as wellness. Those who knew my history of academic and personal achievements unintentionally damned me further with their disbelief. My conditions may have been at times invisible to my general appearance, but my physical limitations, abnormal test results, and relentless symptoms were glaringly apparent.
Ableism acts as a shield to protect the mind from believing one could become ill. Illness isn’t as simple as a choice. It’s not an inherent character flaw. It isn’t as simple as a mindset. It’s also something intelligent, happy, motivated, successful, and enlightened people can experience. Being ill has many sorrows but being vilified for it is the most harrowing and condemning aspect.
Society only desires a sickspiration story with a happy ending and clear resolution but that isn’t my truth, or the truth of many patients, at least for now. I have not achieved remission for a majority of my conditions, but I still live with purpose. I live a life that pivots to meet the realities. I can decide my fate as long as there is consideration for my health. I can utilize the available healing modalities and assistive devices to further my range of abilities and attain better health.
Reading scientific journals and literature, devouring medical books and studies, attending conferences, and by challenging and working with talented doctors some significant underpinnings in my conditions have been discovered. This has led me closer to resolution mentally and relief physically.
This progress couldn’t be accomplished without dedicating decades to researching, learning, and implementing treatments for disease management. The continuation of this journey is lifelong and requires all of my resources. The expense alone is staggering and the cost of the necessary surgeries, medications, travel, health insurance, and treatments remain unattainable for myself and many patients. This also equates to lack of treatment options, disease progression, and further disability for those same patients.
Through this journey I have learned that you will need others to provide you space to exist, time to heal, and a capacity to find your needs reasonable. You’ll need passionate and curious doctors and healthcare providers to work with you to identify, demystify, and treat your conditions. They can provide a clearer focus, find patterns in the chaos, and be the eye of the storm.
It is not as simple as prescribing self care for those who need significant comprehensive and community care. Ultimately, it is the team effort of patient and provider that results in the most successful disease management. We need to see substantial collective change throughout our dwindling healthcare system. Patients are taking responsibility. If patients can rally, petition, and fight for change within the medical and political realms, why are so few others willing to do the work?
How we treat those in need is reflective of our society and ourselves. We need to see more awareness, unbiased research, and substantial funding to bring about the structural changes needed to serve patients. I only criticize the medical community because I know their brilliant minds are capable of accomplishing a better quality of care. I continue to criticize the quality of scientific research, as it is mired in commercial influences and sponsorship bias. Unbiased research is the only way to collect information that expands upon our knowledge and does not manipulate it for profit.
As much as I am able to, I separate myself from the symptoms, the time spent at appointments, the side effects of treatments, and the burden of medical trauma. I am more than the sum of those parts, yet they are still reflective of my experience. My attention is focused on the intricate tapestry that’s woven of health and self that I’ve been tasked to mend. Little by little, I’ve collected the leftover strings and started braiding a new design. It will be vibrant, and it will be as illustrious as the original plan, but it will simply not be as before.
- Amber