Am I Posturing?

Here’s an idea

Over the past year, people have asked me many questions about my health, then proposed how I should approach seeking medical answers. At this point, the suggestions and perspectives overlap, muddling all of the feedback into one processing & storage facility within my brain. I know people have good intentions, but. 

So it becomes complicated when there are so many factors that affect my ability to receive the correct diagnosis.

My health journey began in early summer of 2024, when bloodwork that was done during my voluntary psychiatric hospital stay indicated that part of my lab work was not within the “normal” range. I began experiencing widespread pain, dizziness, fatigue, and other symptoms after my lab results were examined. Since last summer, I have been limited in my mobility due to my symptoms, as I become extremely dizzy when my posture changes from sitting to standing. I know that my widespread pain and fatigue is because of my fibromyalgia, but I continue on my journey to receive the information that will allow me to further adapt in my daily life. 

Posture and diagnosis

After rounds of regular bloodwork, head imaging,  EKGs — plus two heart monitors — I do not have an official diagnosis for POTS (Postural Orthostatic Tachycardia Syndrome), yet it fits as “a group of disorders that feature orthostatic intolerance. Orthostatic intolerance is the term used to describe symptoms that occur when a person stands up and can be relieved by lying down.” I fit the criteria of having this condition, due to the fact that I become dizzy when standing, as well as my heart rate fluctuating before and after standing. Thus, my posture is part of the diagnostic criteria itself. Possibly. 

About two months ago, I decided to go on a walk around my neighborhood, ignoring my body’s intuition that I overexerted myself. As a result, I endured presyncope/syncope and collapsed in the grass a few streets over. Since then, I do not attempt to regularly overexert myself. When I reach the breaking point, I listen to my body. It isn’t safe to collapse in grass, especially when your heart rate reaches the 150-160  beats per minute range. I suspect that I have POTS, but it has not been officially confirmed by a healthcare provider. It’s often hard for me to tell if the symptoms I consistently undergo are from my fibromyalgia (pervasive pain) or from what aligns with POTS (standing symptoms). I am unsure of which specific condition it is, as it seems to be one of three conditions on the POTS spectrum.

Although I am 23 and still figuring out how to adapt, I have many interests and ambitions that fill up the time I have lost. Even with lost time I could have spent at college parties or social events, I feel proud of who I am, and who I am becoming. I have gained a deep fondness for accessibility initiatives and disability rights. Activism and advocacy has become a love of mine, and it’s something I often research, to inform myself on a deeper level.

Accepting and adapting

Being a disabled woman is part of my identity, something I have learned to take pride in. The disability community is my community — my connection to others who can relate to my experience. My health journey has changed my outlook on the world, as I continually consider elements of my everyday life that I previously did not think of. For example, in social gatherings, I bring snacks, water, a portable fan, and a foldable camping chair, just so I can comfortably participate. 

When traveling, I research the cities and their accessibility features. Will certain routes require more walking? Do certain hotels and buildings not have elevators? Do I need to bring my shower chair to the hotel? Are there seating areas inside and outside of popular destinations? Am I allowed to bring my own water bottle into museums? Depending on my energy level, I sometimes have to skip or delay traveling to further destinations within a city. 

Overcoming hurdles

I attempt to adapt as best as I am able to, but it can be very difficult at times when I am unsure of which accommodations & support needs to utilize.  In August of 2024, I purchased my first cane in order to independently support my balance when walking. Navigating a college campus was already challenging before I became more physically disabled, but it developed into something that was 10 times as difficult. 

The college I recently graduated from is known for its historic features. Translation: it was not the most accessible. 

For instance, traveling to academic buildings was extremely frustrating, as I would often have to cut through other buildings with fewer stairs to reach class. Moreover, I had to speak to several of my professors about having classes relocated to a different building, so it was easier for me to attend my courses. Going from my dorm that had an elevator to the cafeteria took me an extra six minutes with my route of shortcuts. Accommodating myself for one year on campus was not simple, yet I persevered and graduated.

Reality that is life

However, in less than six months, the grace period for repaying my undergraduate student loans will end, meaning I will start paying back my loans. I do not know if continuing to keep searching for verifiable results is a viable option for me in the near future, even though I view it as necessary.

To most, it’s just some writing on a piece of paper. Just something on my patient portal. Just words. People often ask me why I keep trying to figure out what is going on with my health, why I am getting myself into debt over it. I see it as something that is vital for myself. Wouldn’t I wish I didn’t have to owe a lot of money to doctors and hospitals just to figure it out. 

Taxed if you do, taxed if you don’t

That’s the reality of being chronically ill. It’s either I get myself into medical debt or go without knowing for the rest of my life. That’s the disability tax: the extra money that I put into healthcare and mobility equipment so I can thrive in this world. 

For myself, seeking a diagnosis is not about a label or just something that exists in my medical chart. A diagnosis will create the specific accommodations that will help me succeed. I need it. Accommodations are tailored, personal, and often based on your medical history. Without it, I will continue to have difficulty finding jobs I am able to perform as a result of the physical limitations my health has on my body. I aim to continue searching for a job where I do not have to stand for long periods of time or lift a lot of weight. Impossibly. 

I know I will eventually reach this goal, because I know I have a support system and will have better access to resources when I am no longer in central Virginia. 

I may be unsure of how my life will look in terms of my health, yet I approach this challenge through the lens of destigmatization and inclusion. I can accommodate myself to the best of my ability, while using my voice to speak up for those who cannot do so themselves. 

When life feels tough, I remember a quote that has helped me through hard times, “Embrace the void, and have the courage to exist” — Daniel Howell.  

To readers who can or will be able relate to my experience at some point — you are more than valid. You are seen, you are enough, and you belong. You will eventually have the medical results that you have sought after for so long. 

You are not alone in your journey. When you are ready, there will be others in the disabled community who will welcome you.