The Coronavirus Just Hit NYC, And I'm Feeling Frightened
I just got off the phone with a reporter from TheLos Angeles Times. They were asking people in the disability and chronic illness communities if people were having a hard time getting access to medical/preparation supplies or doing any special prep due to Coronavirus (aka COVID-19).
Feeling left out
They also asked if people were feeling left out of the conversation around the virus. I tweeted in response that although I am currently not on biologic drugs at this time (I was), many of my friends in the chronic illness communities are — and that they are faced with the hard decision of going off the medicine they desperately need in order to have more of a chance of fighting the virus if it comes their way.
One of my friends asked me via Facebook last night, "I wonder if I should go off my immunosuppressants or not? I want to stand a chance to fight the virus." This was after the first positive case of Coronavirus was identified here in New York City, where we both live. Others chimed in and asked questions like, "Does AS make me immune-compromised?" (yes) and "This is up to your doctor to decide" (it's all very individual and we should each have a say in our health care choices).
More so, a good amount of AS patients I've spoken to have rheumatologists who don't initiate the conversation around the Coronavirus. Many try to advocate for themselves and to understand the risks — and sometimes doctors reduce their fears or say that the risk is small, to not worry. We've all been there.
How many of us have been reduced and ignored — for years — in the journey toward diagnosis?
Lack of communication
I've received no communication from the hospital or rheumatology department I'm a patient at. I've not received Coronavirus-specific communication from the company that makes the drug I used to take (although I am still on their email chains). I realize that this pandemic has spread quickly and unpredictably, and so that may account for the lack of communication — but this all leads a patient to wonder, rightfully so: What are the best next steps I can take to protect myself and my community?
It's not just that, though. People are constantly being bombarded with messaging like, "Don't worry — your risks are low unless you're immunocompromised or elderly," as if it'd be totally fine if we lost these folks. It's insensitive and tone-deaf. Because everyone's life matters and anything less is ableist and ageist. What's going on is frightening. People are dying. Supplies are limited. And there's a lack of information in general.
It's as important to be informed, have perspective and keep level-headed as it is to acknowledge the potential of contracting a virus we don't yet understand much about. And when you live your everyday life as someone in pain, inflammation cropping up like crazy, or taking immunosuppressants, it's easy to let these fears get to you.
That doesn't make you histrionic or sensationalist or a cry-baby. It makes you human, and I think we can all be a little more compassionate about that.
I think it's important that we talk — as a community, to our rheumatologists, to our family members. I think it's important we speak out on social media and ask questions and do our research. It may be that researchers learn more and get everything under control. And it may also be that the news does sensationalize the issue. But none of this negates or invalidates our worry. Stay safe out there.
Do you use the word disability to describe your AS?