The Frustrations Of Arthritis Advocacy

Last updated: December 2020

Outsiders could be forgiven for mistaking the constant parade of advertisements for treatments for arthritis, psoriasis, Crohn's disease, and ulcerative colitis for proof that the war is over. Taken together, these ads emit the triumphant vibe newsreels from the second world war showing seemingly endless allied power in the form of convoys, rows of tanks, and paratroopers pushing on to an inevitable victory.

We've never had it better!

Diagnosis and treatment guidelines are defined. There are treatments in multiple drug classes, with more in the pipeline. Opportunities for networked arthritis advocates are consistent with this abundant treatment environment, allowing patients and organizations to collaborate around shared goals of improved awareness, decreased time to diagnosis, and improved access to care.

This all sounds great, right? Problem solved! Nope. Put your confetti back in the can. Were any turtles harmed during your celebration? Get right with the turtles and meet me right back here, because virtually nothing is solved.

Where are the hyenas?

Does your zoo have wildebeests? Mine does. Lenny and Jeffery joined The Detroit Zoo in 2017. They live in a naturalistic environment called The African Grasslands Habitat, a nature-inspired holodeck where everybody lives to fight-I mean saunter-another day.

I saw some real African Grasslands, in Tanzania's Ngorogoro Crater Conservation Area. Don't tell Lenny and Jeffery, but lions and hyenas go pretty much everywhere wildebeests do. And some hyenas killed and ate their cousin right outside my Range Rover. My money was on the lions, not something Detroiters usually say, but they'd already eaten. Those scoundrels were sprawled out like Haile Selassie's cats.

Why is everybody squinting?

Arthritis advocacy happens inside an engineered habitat or parallel universe, where participants roam in business casual attire, looking out at spondyloarthritis through specific sets of binoculars.

Researchers have access to the best tools and insights makes them uniquely powerful to change how patients are perceived, but they spend most of their time alone, together. They're often surprised by resistance to their expertise. And the barriers many of us face getting diagnosed or accessing meaningful care and support don't always compute.

Sometimes organizations are like Mean Girls, because they compete for funding, prestige, and influence over meta-narratives. They also work with legal limitations around how to address underlying barriers to thriving that arthritis patients and families face.

Patients are a dynamic group that may have lots or nearly nothing in common. Our pre-arthritis world views and mindsets are likely to persist in some form. Community-minded patients inclined toward empathy, compassion, and cooperation can go on to do great things. And the jerks, they're here too.

This gets my hackles up from time to time. Sometimes I have to take a few steps back, but nothing will stop me from working to help as many patients as possible. We're blessed to live in a time where networking, research, and organizing are easier than they've ever been. I can't let that go to waste.

What do you think would improve advocacy?

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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