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When I began receiving infusion treatments for Ankylosing Spondylitis I had no idea how to prepare for my appointments. What do I bring? What do I wear? Do I need a ride?
Now, well over a year of regular infusions later, I often tell people that infusions are my favorite appointments because I actually feel like a patient. All I have to do is show up and be treated; I don’t have to steel myself for a consultation, review medical records ahead of time or expect to receive a new diagnosis or a change in medication. I just show up, get poked with a needle and catch up on emails or Facebook until I fall asleep. Minus the awkward IV pole, it’s the perfect SpA treatment (all you Spondyloarthritis folks got that joke, right?).
First of all, what is Ankylosing Spondylitis (AS)?
Wait, how do you even pronounce it?
Ankylosing Spondylitis (An-kee-low-sing Spon-dih-ly-tuss) is a disease that causes inflammation throughout the body, especially in the spine and low back, and can cause bone spurs to fuse joints together, typically in the spine. As you can imagine, extra bone growing in your body that’s not supposed to be there can be quite painful. Additionally, since AS is systemic it can also damage organs including the eyes, liver, lungs, and more.
So now that you know a teeny bit more about AS imagine you are the one who was just diagnosed with it.
Congratulations are in order simply because you are reading this blog post. It’s difficult to believe, but I often hear from people whose family and friends shun them for “faking being sick.” These same family and friends often don’t make an effort to learn what their loved one is actually experiencing. So thank goodness you believe your friend and want to learn more.
What you don’t see is that I’m faking health to preserve my dignity, energy, and ability to accomplish whatever task it is I have to do before I collapse. Faking it is hard, but it’s easier than displaying my pain and then having to use more energy to defend my body’s permanent sickness.
What you don’t see are the grimaces I make when I’m in a safe place, when I allow myself to actually respond to the pain that is unrelenting, the pain that I do my best to ignore in public.
What you don’t see is the fear underlying my existence. Will I die young? Will I lose healthcare? What if my disability is denied? Will this new treatment work? Will I become homeless? Will I find a forever partner?
The day before I turned 30 I received an email that would change my life.
It is not abnormal for me to receive emails from chronic disease patients, news outlets, doctors, and advocacy groups.
But this email was from Victoria, a videographer, sharing her vision of a documentary highlighting the stories of three people living with physically debilitating, incurable diseases. She wanted me to be one of them.
There is not a one-size-fits-all way to become a chronic disease advocate or activist. Everyone’s journey will be shaped by personal experiences, interests, time and ability.
I’ve gathered these tips from my own journey, but by no means is this an exhaustive list and I don’t recommend attempting them all at once. Also, while directed at people who have chronic diseases, these tips can apply to partners, caregivers, friends and family who want to become allied advocates.
As long as the end goal is to raise awareness publicly for the sake of social or political change, there is no inherently wrong way to create an advocacy platform.
1) Get comfortable telling your own story. Come out as sick. Introduce your disease to friends, family, and peers in a manner that also outlines your clear desire for them to listen – you may even need to say, “This is my story and unless you have lived it, I expect you to really hear me.” No one can tell your story for you and owning your experience can be empowering. Also consider that there are hundreds, thousands, or millions more people experiencing the same things you are.
I want to go to the doctor one day and once again check the box on the intake paperwork that says “generally healthy.” The once robotic maneuver of sliding my arm smoothly down paperwork to check off a straight line of boxes is now a chore requiring concentration and an agile hand zigzagging across columns.
Having the opportunity to check that “generally healthy” box would reinstate my self-worth as an able, capable human.