I’ve been wanting to write about chronic illness life during a pandemic for quite a long time. But, there’s so much to say and unpack that it’s been hard to narrow it all down to fit into a blog post. And also hard to articulate all the things. Especially the very hurtful parts. But, it’s such an important topic to discuss, that I will try my very best. I won’t be able to cover everything but hopefully enough to explain how very hurtful this year has been to me and my chronic illness community.
First I very much need to start with a shout out to my fellow spoonies – a term used to identify those of us with limited energy due to chronic illness. Check out the spoon theory link in my Accessibility Matters post. We are rock stars in this pandemic. First, we’re already used to having to stay home not by choice but because our health issues require it. Second, those of us with disabilities are used to having many activities inaccessible to us. And third, we’re used to being uncomfortable and always in pain. Typically we are not complainers. In fact, I would argue that we need to “complain” more to alert others to our needs. We were made for 2020.
But…here comes the hard part. The reactions of many in the able-bodied population has been so very hurtful. Minus the first 2 weeks or so when it felt like as a global community, we were all in it together, I cannot tell you how many times I have repeatedly heard the idea in one form or another that people miss “normalcy”. And that the way to go back to “normalcy” is for those of us in the at-risk population to stay at home. (Normalcy is in quotes because what is normal?)
Usually this is manipulated into some form that helps the people saying it feel like they are caring for us. But in reality it’s just a strong form of ableism. It communicates that the world can go on without us. That we do not add enough value to society. That we are not worth sacrificing for.
Perhaps the most hurtful part of all of it is the reaction of the majority of the faith community I’ve devoted my whole life to and their push to continue with in-person services. A community that professes to love everyone, to be for the least of these, to be a safe place, to welcome everyone. When in reality, many of these churches are content to go on without us. “Normalcy” is more important.
Fortunately, I am thankful that I’ve found a faith community who continues to actually include everyone. Who has come up with very creative ways to virtually include everyone. Proving that with extra thought and care, it’s very possible. My family even got to participate in a virtual Christmas pageant. Share in a comment the creative ways your communities have been safely including you or other vulnerable people during 2020.
The other very hurtful part, especially for me, is when people use “mental health” as an excuse to return to normalcy. I am not arguing that social distancing and quarantining isn’t hard on our mental health. Of course it is. Those of us in the chronic illness community have been talking about that for years. But here’s the thing… I’m a mental health provider. And I have been working tirelessly throughout this pandemic to care for the mental health of children and families. Those struggling with virtual school, anxiety, depression, “pandemic fatigue” (as I like to call it), ADHD, trauma, and so many other issues. And those same people, are saying that I should just stay home. See the problem?
The chronic illness community is large. We are everywhere doing important things. We are psychotherapists, nurses, physicians, teachers, retail workers, and every other essential job you could think of. These are not jobs that can be done while staying at home. Some of my clients have thrived through teletherapy, but many of my youngest clients and those with ADHD, autism, or other concerns have continued to need my in-person therapy services. While teletherapy and telemedicine have made very important advances during this pandemic that I hope continue, not every need can be fulfilled in these formats. Chronic illness people are important people with important jobs and important families. We are worthy of the sacrifices of others. We are worthy of the protection of others.
The quest for “normalcy” in the context of this pandemic is just another form of the age old problem of ableism. 2020 has been a hard year for all of us. And I am not minimizing in any way the mental health struggles of everyone. But in the quest to get back to “normalcy”, think about the mental health needs of those of us in the chronic illness community too.
Every work day, I get my rollator out of my trunk, roll myself and heavy work bags to my office, put on 2 masks for hours at a time, joyfully and happily help my clients (I truly do find it to be a great privilege to help others), disinfect my entire office after every session, and then come home to my social media feed filled with “friends” telling me in one form or another that I should just stay home. Or those complaining about wearing a mask. Even from a few outlying medical professionals whose ideas get shared repeatedly on social media despite contradictory scientific evidence. As soon as I think I’ve unfollowed all the guilty parties, someone else unexpectedly shares this same idea. Think about the impact that has on my mental health and the mental health of others in my chronic illness community working tirelessly during this pandemic to help others.
We need to abandon black and white thinking. The world is full of all sorts of beautiful colors. Yes – this pandemic is hard on everyone. Yes – we are all grieving many losses (myself and my family included). But also yes – with creativity and ingenuity we can figure out safe ways to serve many of the mental, emotional, and physical needs of those most vulnerable among us. But only if we are truly all in this together.
As we’re starting a new year and nearing an end (hopefully –make sure to take your vaccine when it’s offered to you!) to the Covid-19 pandemic, let’s start over. Let’s use our energies to stop arguing about how to best serve others and how to help with mental health in the context of “normal” times and start creatively thinking about safe ways to actually accomplish those goals in pandemic times. Let’s make a new better normal. Together, including those of us with chronic illness, we can accomplish much. Happy (hopefully) New Year everyone!