Jumping through the many hoops of chronic illness & pain

As a Black and Indigenous Queer person navigating the world is an intricate maze of hoops to jump through. Such hoops are more complicated when chronically ill, especially when financially disadvantaged and identify as a non-cisman. Receiving a diagnosis is made more intricate when experiencing gaslighting and have limited resources.

I was born with eczema, severe allergies and asthma. I've never been self conscious about having those three conditions though the ignorance I was often subjected to as a child was frustrating. At about the age of 9 or 10 those conditions settled, but my chronic pain began. The first "diagnosis" I received was “growing pains.” This is exactly what young non-cis men are often diagnosed with as children when complaining of pain.

For every time I’ve neared a diagnosis I’ve been confronted with another hurdle. The stress caused by setting up appointments, chasing missing documents and referrals, dismissive experiences at appointments, and being unable to travel the distance required are a few of the hurdles I experience. Supplementation, adequate nutrition and out of pocket expenses such as occupational and physical therapy can indirectly and directly cause stress which worsens virtually every condition I have. 

"You can handle it" is the dismissive mindset of others which I've come to realize is the consensus for incurable conditions and ailments. Most people dread their labs being abnormal, but for some of us it at least makes an inkling of sense and allows us a fair chance at being taken seriously. 

Since the age of 10 I've had to be my own medical advocate, read up on my medications and find an at-home treatment plan that works for me. That doesn't inherently make things easier, there's still confusion as to what's even in my chart, and I'm a rising college freshman with many new academic demands. I'll probably always have to request my own referrals and blood work and will continue to have my fair share of disappointing appointments. 

It'll always be a struggle to finance my less than stellar health that seems to want to wreck any ounce of normalcy I once had. There's not a happy ending to this story, at least not yet. Research for my speculated conditions is not the best and it's definitely not inclusive to people of my racial admixture and background. The most I can do as I prepare for my upcoming appointments and meetings for my diagnosis', accommodations and adaptive aids is to minimize stress and prep for the "worst.”

If there's one thing myself and other chronically ill people seem to take from our frustration, confusion and mistreatment is that we will no longer wait on our doctors to suspect an issue, inform us of medication side effects and interactions, what conditions we could possibly have and our non-pharmaceutical options. We're patients and advocates simultaneously handling our health while trying to help others avoid the pain and trauma we’ve suffered and be available for support. We may be hurting both mentally and physically but we know we deserve the best quality of life and we'll find our way to regardless of how the world views and treats us.

-Destiny Whitaker

Jen Deerinwater