I know folks are feeling scared and overwhelmed with the prospect of social distancing, isolation, possibly even quarantine. Here’s a missive from someone who has experience being housebound. I’ve been mostly housebound since sometime in 2017. As of this writing, I have not left my home at all since October 2019. I need help with the functions of daily living, and have had a personal care aide since February 2019. I get by with the help of friends. It’s OK. I’m OK. But being OK with it didn’t happen overnight. I’m hoping that some words of wisdom from experience might help soothe your soul just a little.
Let’s start with feelings.
It’s OK if you feel trapped in your home. If you’re mad that the game was cancelled. If you’re upset that some stupid virus is running all your plans. If you wanted to visit your father, but it’s not safe. If you’re scared. It’s OK if you desperately want to control your situation, and that of people who you love. Its OK if you like being at home and escaping the rest of the world. Its OK if your introverted self sighs a big sigh of relief.
So much of who we are can be wrapped up in our obligations, our activities, roles, identities, that stepping out of them can be uncomfortable, even anxiety producing. There can be very real sadness, disappointment, grief, when we can’t do things we were looking forward to, like a concert, movie, trip. And a whole different kind of distress when we can’t participate in milestone moments for our loved ones, like funerals. Some of you are going to miss graduations, Mother’s Day celebrations, birthday celebrations, weddings. It’s going to be hard.
All your feelings are valid. And the more you pay attention to them, say hi, feel them, name them, and move toward some imperfect acceptance of them, the easier everything is going to be. I promise. Also, I’m not saying its going to be easy.
Also, we can do hard things.
Humanity and Vulnerability
The next thing we can do is remember that we are human. And that part of what’s happening right now, our move toward social distancing, might feel like it flies in the face of our humanity. We were meant to connect, to hug, to play sports, to go to concerts. And we’re not doing that right now. It feels uncomfortable.
But we’re doing something else that is very human, which is taking care of ourselves, our loved ones and our communities. Nesting. Pulling our loved ones close. It just might look different than how were using to doing it. And that can feel vulnerable.
Here’s the thing. We are all vulnerable.
On many different fronts, all the time, even if we spend our days pretending otherwise and putting on a mask (literal or figurative). We are. We’re vulnerable to heartbreak, to loneliness, to loss, to joy, to being tickled, to love. And every one of us is vulnerable to getting sick. And while we can, and should, take precautions, we can’t control if we get sick. Just ask the millions of folks with cancer, with chronic illnesses, with congenital conditions.
We can’t control it.
And if we become ill, it isn’t our fault.
So maybe you’re isolating because you don’t want to get sick, or further compromised conditions you already have. Maybe you’re protecting others. Maybe you are sick and you need to quarantine. You can do this.
We don’t need to do it alone.
Most of us already know something about staying connected to folks we are physically apart from. We have more communication tools than ever. Social media. Texting. Messaging. Email. Mail. Video calls. Stay connected to folks you care about, even if you haven’t been in touch for a while. It’s OK to break the ice with a text that says, “Hey. I know it been a while. But I wanted you to know I’m thinking about you.” It’s OK if they think you’re a weirdo popping up out of nowhere. But they also probably won’t.
In my experience, community and support can come from unexpected places. When I became much more seriously ill, some of my regular friends just kept on keeping on right next to me. Some stepped up in big ways. Some close friends totally ghosted me and disappeared. Some old friendships were rekindled. And amazingly, some new relationships began.
So great. We have some feelings and we are staying in touch with our people. But there are so many practical things to manage! Figure out your tools. Slow down and make a list. I like to go back and asterisk the ones that are actually critically important. But everything is important! Maybe. But sometimes things just can’t get done. Focus your energy and resources on what matters most, and what needs to be done first. I never asterisk more than five things. I’ve even written lists of things I am not going to do! Liberating.
Don’t reinvent your organizational systems, unless you have none at all. Then, do the most simple thing possible and make a list in the place you are absolutely most likely to find it when you need to add to it, and find it when you need to reference it. This is likely your phone or a notebook.
Come back to this again when things change, or any time you start to feel overwhelmed. Sometimes just getting it out of your head is really helpful.
Here’s where you start: figure out what you need. Sometimes this is hard. We just feel icky. Or panicked. Afraid. Overwhelmed. Take a few deep breaths and notice how you feel. Then see if you can find the answer. Maybe you need to write. Maybe you need to talk it out with a friend.
Sometimes the is obvious. You need milk. But you can get even more precise, like I need a gallon of either 1 or 2% milk by 10 am Thursday so I can take my pills.
Next, figure out if it is something you have the power to take care of yourself, or if help would be a good thing.
We might need help. Dammit.
What?! I’m independent! I take care of myself. I don’t want to be a burden to anyone else. They have their own things to deal with. They probably don’t want to help me anyway. What if they say no?
Be willing to ask for what you need. This is super hard for a lot of people, and it goes against the grain of our over culture. But it’s exactly what is necessary in community. And most of us say it’s what we want others to do. We want them to ask us. So if we’re the ones in need, our job is to ask them.
Community and Mutual Aid
Identify who you could ask for things. Some folks start here with the answer of “no one.” While I believe this answer can be true, I also believe that it is very rare that it is true. Think expansively. This is the time for the wild brainstorm. The list of everyone you know who isn’t a jerk. Even if it makes you uncomfortable. Once you have that list, you might want to start thinking about ways those different people could help. Over on my Chronically Ill Viral Preparedness page I link to a great little document called Podmapping for Mutual Aid by Rebel Sidney Black.
I have an incredible network of support, and I know I can just throw out something (I need someone to take a package to the post office for me by Friday) and someone will raise their hand. But I also know more specific things about some folks that can make it easier to target my requests to the right place. Like, several folks I know go to the grocery store 3-5 times a week. Those are the folks who can keep an eye out for the specific items I need that are getting hard to find. They might do better than my regular grocery shopper.
I also know who I can turn to for emotional support, and that I can ask for what I need there. I know who I can text and say, hey, I’m having a hard time. Do you have time to connect on the phone for 15 minutes and just listen?
A couple of years ago, a friend shared a poem with my that was written by Tad Hargrave. It really helped my shift my thinking:
how do you create community?
how do you create community?
i do not know
a hundred ways
a thousand ways
how do you kill community?
I can tell you one
sure to do the job.
always have enough
always have it together
always be a giver
always have all the tools you need
never need to borrow a sewing needle
never need a cup of sugar
never tell anyone you’re breaking down
never need anyone
your insistence on competency
your unwillingness to be a burden
when it is the proper time for you to collapse
may be the end of us all
knowing what time it truly is
or knowing how to know the time at all
needing our help
being unable to continue without it
how to do everything
creates the occasion
for the village to reconstitute itself
and know itself again
And let’s talk a minute about need. Need is not a magic threshold you have to hit before you’re so desperate that you have no choice but to ask. Try to set that bar closer to when you have a longing. A sense of something. A realization. When you start to worry just a little. This is not an exercise in stoicism. A major form of self-care is not practicing stoicism.
If you looked over that podmapping exercise, you would notice that it isn’t just about who can help you. It’s also who you can help and how. Do something for someone else. Are the stores out of toilet paper, but you maybe went a little overboard on preparing? See who you know why needs a few extra rolls. Are you coping by baking, and aren’t sick yourself? Offer some of those baked goods to a neighbor. Are you going to the store? See if someone needs one or two things you can pick up.
If people in your life have identified themselves to you as being high risk, or have needed to isolate or quarantine. ask what they need. Then listen.
Healthy folks aren’t the only ones who can be helpful. NO, if you’re very ill in bed on a ventilator, you have absolutely no place helping others. Your job is to just accept help as it is offered. But even those of us who are compromised are often able to help others in some way. I’m reliant on others to do my shopping and wash my dishes. But Just last night I was able to talk with two folks on the phone and hold space for their grief and fear about their elderly parents. I’m a great problems solver, and disseminater of information. I have a car I can lend out when a friend needs one. And I have a surprising number of cupcake tins. And a Bundt pan. Please don’t buy a Bundt pan. Borrow mine.
I’m not talking about Instagram-influencer-capitalist self-care. I mean what keep you the most OK you can be. Eat good food if you are able. Drink water. Take a breath. Tune out of media and conversations that are unhelpful and fear mongering. Exercise in a way that is appropriate for your situation. Stretch. Read a book. Tune out for a while with TV or a movie. Get clean. Change your clothes. Ground into your body. Laugh. Play a game.Spend quality time with your pets. Listen to music you love. Cry if you’re sad or scared.
This is also a good time to figure out what some self-soothing tools like like for you. We know that one of the best ways to get our nervous systems to calm down is to regulate with others. You might still have that option if you like with loved ones and no one in your household is ill. But, especially if you like alone, this is much harder. Give yourself a hug. Deep breaths. Find a mantra. Hug a pet. Hug a stuffed animal – even if you’re an adult! No one is watching.
This will get more real
Rinse, and repeat all things things as needed. We’re still at the beginning of this pandemic. Many of us will be, but not everyone is going to be OK. And remember, there are lots of effects playing out, like product shortages, threats to small businesses, impact on elections, etc. Lots of things will be hard.
When folks who are at high risk are afraid, they have good reason to be. Don’t rush to reassure or try to make it better. Don’t gloss over their feelings because of statistics, or because the idea makes you uncomfortable. Instead, try listening to their pain and fear if you have the bandwidth. Just be with each other.
Take all the precautions you know by now are appropriate and necessary. Do everything you can to protect the vulnerable folks in your life. Wash those hands. Ask them what precautions will make them feels safe. Notify them if you come to find out you were exposed, or if you become ill.
Do not over buy things you don’t need that others do, unless you’re buying them specifically to make them accessible to folks who need them. Lots of folks use masks and alcohol wipes in their daily lives. Many of us have dietary restrictions at play when we are faced with empty grocery stores.
And the bottom line, is we just can’t control what happens. All we can do is get honest with ourselves and out loved ones, and figure out how we do the best we can to make it through together. It’s going to take all of our big hearts and deep breaths.
You might also be interested in:
For more thoughts on how we can support each other in hard times, check out some of my other blog posts:
Supporting Each Other: Part 1 – learn some tips on who you can dump on when someone’s going through a hard time.
Supporting Each Other: Part 2 – tips from Celeste Headlee on listening
Supporting Each Other: Part 3 – thoughts fro Heather Plett about how to hold space for each other
For resources on chronic illness living, and disease-specific information on MECFS, check out my Chronic Illness Resources page.