Not a Competition

Competition is an innate part of existing as human beings but can be generalized across anything living. Things that humans have built can be taken for granted based on the inherent need to improve ourselves, to do more and be better. Without challenges, we may not have created life-saving medications and cures for diseases as we developed personalized medicine.

From viruses (which are not even able to thrive alone) to the top of the animal kingdom, especially as intelligent beings, we no longer compete just to flourish and live but do it for recreation and sports. As of my writing this, I am doing a walking challenge where 19 teams of 9-10 people are competing for the most steps.

When someone asks how I am doing

When someone asks how I am doing, I try to be honest without pointing out that I have chronic illnesses. I might say “ok just tired.” The other person might try to one-up me by saying something like, “yeah, I get you… (insert reason as to why theirs was same or worse).”

How a person feels each day should be taken with compassion, caring, and empathy. So I do my best to respond kindly, as I don’t know what that person is going through in their own life. It still feels like it’s a competition, though, to see who has it worse, rather than being compassionate most days. Truly, though, I wish it was more the latter.

Feeling conflicted

As humans we compete for everything except one thing: medical conditions and disease diagnosis.

I say this as I contemplate my second year as being nominated for a Social Health Award as a patient advocate in narcolepsy and sleep apnea. I am truly appreciative for being recognized by this organization as a contributor to patient advocacy and health condition awareness, especially for sleep disorders that are rare and under-diagnosed.

But I feel conflicted as well for all the challenges and strife it has taken to be known as a person with narcolepsy, sleep apnea, allergies, thoracic outlet syndrome, chronic migraines, nerve impingement disorders, chronic pain and fatigue, and fibromyalgia. This list can continue, but no one ever said, “Congratulations! You have chronic and rare medical conditions (and maybe the most I’ve ever seen!) that aren't terminal, but you’ll have to manage them for the rest of your life.”

Being publicly vulnerable

To advocates everywhere: you are all amazing, awesome, and beautiful people for contributing your own lived experiences and knowledge on various health topics. I support you all! I would give an award to every single advocate (nominated or not), as you all have the courage and mental fortitude to be vulnerable in the public eye.

Being publicly vulnerable can lead to being seen as less by some, regardless of why you are open and sharing a lived experience. Being a person diagnosed with chronic illness from the time I was a teenager has been a true struggle. I have been mistreated, taken advantage of, terminated from high-level job positions, denied disability, disqualified from life insurance, denied medical insurance coverage, treated like I was incapable, told in fact I cannot. Yet I continue to compete with those that know nothing of what it is like to have all of these diagnoses.

Having a chronic illness is not a competition, nor should it be when asking someone: how are you doing today?