COVID-19? Coronavirus? Try adding a different “co” to the mix—community.

Everyone’s got the “CO” on their tongues these days. It’s unavoidable.

But rather than losing your thoughts to coronavirus-provoked ruminations and anxieties, let’s talk about the utility of exploring a “co” of a different kind—community.

Now more than ever, it’s imperative to enmesh yourself in a group of people whom you can commune with.

For the good of your mental health, while we’re physically isolated from others.

And for the good of your overall well-being as you spend the forthcoming years rocketing around the sun. This point was reinforced to me in a course I took, The Science of Well-Being. Social connection is scientifically proven to make people happier.













Looking for a general life update on what’s happened between now and last time?

Sorry, this ain’t it.

I promise I’ll piece together the pieces of my ongoing medical journey, one of these days.

But given my track record of blogging starts and stops, hitting up my Instagram for a snapshot into the latest in the world of wherearemypillows is really a safer bet.

From Coronavirus —> Community

There’s a lot of doom and gloom out there in everyday conversations and news headlines in relation to the pandemic at bay. Understandably, this is causing a lot of anxiety for people.

We don’t know how long the world will be under siege by COVID-19.

We don’t know how badly the economy will be setback.

We don’t know who will and will not lose their life to this illness.

For the first few weeks of lockdown, I had become strangely obsessive about scrolling through the Coronavirus subreddit and reading all about the devastation the virus is causing in various communities. It became a guilty pleasure.

A flareup of my own chronic illness is partially to blame for why this went on for awhile. I just didn’t have the energy to form any healthier habits. But eventually, I found myself asking: what am I getting out of this? Is there not a more productive way I could be spending my down time?

Obviously, yes.

The next time you find yourself annoyed, anxious, or just plain tired of thinking about coronavirus, I urge you to try to think community instead. Cheesy, sure; but this is simply about using a common cue, COVID-19, associating it with something phonetically related, and tricking your brain to think about something else instead.


Three Steps to Combat COVID-19 Anxiety

People living with chronic illness often find themselves more isolated due to the nature of their disease; we don’t need yet another factor to pose as a barrier to connecting with others. It can be hard to be yourself around people you doubt would understand or accept you if they knew the details of your medical condition or saw exactly how it impacts you.

Ruminating about COVID-19 is a good way to amplify those feelings of isolation. The solution? Train your brain to think about community instead. By recognizing the value of human connection and shifting thoughts to engaging with a community, we can negate a lot of the emotional effects of both the pandemic at hand AND living with chronic illness.

Here’s your crash course on how to get started:

1. Know the profile of whom you’re trying to connect with.

Chronic illness welcomes you to a layer of human existence that can be hard for many people to grasp, particularly the young and healthy who have not lived through something similar. As a result, I often run into a mismatch between the bandwidth I occupy and the bandwidth of the average, everyday person in my age group. Bridging that bandwidth can be an exhausting effort from both sides.

Sometimes you just don’t “fit in” with the same type of people you used to, and the realization of that is disheartening. But that’s okay. I fully recognize that the things that concern me and occupy my headspace nowadays would be vastly different if I were to be in good health. Going in the reverse direction, it can be hard for someone unexposed to healthcare challenges to know exactly what to say to an individual in your situation.

Heck, sometimes I don’t even have the right words to say to someone in my shoes that could use support.

If you feel a sense of alienation in trying to connect with others, don’t give up. Instead, I suggest taking a harder look at the profile of people you’re trying to form a relationship with. I guarantee you aren’t alone and that there are people out there you can relate with; it might just take a reassessment of yourself and greater acceptance for what you are going through.

Ask yourself: what does your mental landscape look like? What do you want the nature of your conversations with others to be? In answering this, you might find you’re misplacing expectations, and investing time and energy into the wrong places.

On average, we find it easiest to connect with people who are similar to ourselves. Maybe it’s not sexy to admit, but your illness IS a point of commonality between you and others. And there’s nothing wrong with recognizing it as a starting point to building connection.

2. Identify the right watering holes.

The wonderful thing about our hyper-connected, internet-based world? Connection can be formed entirely independent of physical location. You don’t even need to leave your house.

In fact, the internet makes the barrier to entry of identifying and joining communities lower than it’s ever been. Just imagine two decades ago, the logistical complications involved with trying to find someone else—let alone a whole community of people—who shares your invisible illness. Now, you have social media, forums, and the indexing capabilities of Google to help you find and maintain support networks.

Don’t see an active community specific to your rare illness? Start your search broader—you’ll find a sense of connection with people discussing terms like “chronic illness”, “invisible illness”, and “spoonie”. Or better yet, be the trailblazer to start your own rare illness community.

My secret weapon—the one that was critical in helping me to unravel my medical mystery—is Facebook Groups. Now before you skip on to the next point because you think “I don’t have Facebook” or “I never liked that platform”, hear me out a moment on the utility of using its Groups feature.

Facebook Groups have been a major lifeline for me during the past few years, serving as the primary reason I continue to use the platform.  Without them, I would not have found the people who eventually pointed me in the right direction—which specialist I needed to push to see, which lab tests to get, how to advocate for myself while living with a poorly understood illness, and more. 

It’s hard to overlook the fact that Facebook has over 2.5 billion active monthly users. And millions of them have figured out how to harness the power of the platform to organize into communities of all kinds, in a location-independent fashion.

For the uninitiated: they’re a variation of chat boards. Anyone with a Facebook profile can make Groups, or start joining ones made by other people. Inside a Group, you can make a post, start a poll, ask a question, and use the search function to sort through past posts.

One example of where this becomes super powerful is if you want to have a highly targeted discussion about managing your condition with other patients from around the world. Another example is if you need emotional support. Sometimes the words that strike a chord with you can only really come from someone who has taken a walk in your shoes.

Facebook is far from the only place to find community, but it’s one of the easiest if you don’t know where to begin.

3. Join the conversation.

So you’ve figured out the type of community you’d like to join, and have found places where members of this community congregate. Great. Now’s the time to start forming social connections.

We’ll keep things straightforward and assume you’re social distancing, stuck at home, and are engaging in an online community of some sort.

Make a post to introduce yourself. Join an existing discussion. Ask a question. Share what you’re thinking about. Post a meme that made you laugh.

Yes there are trolls out there, but for the most part I’ve found the internet to be a friendly place. Particularly so in illness support groups. Sometimes your post may go unanswered—it happens. Have some persistence; if after awhile you don’t feel like you fit the culture of the community, move on to the next one.

In the case of Facebook and Facebook Groups, note that you can send direct messages to people and form 1-on-1 connections that way, too.

Video chats are another avenue of communication available at your fingertips. During this pandemic it seems that it’s quickly become more socially acceptable to ask people to hang out via Zoom, Skype, Google Hangouts, FaceTime, etc. Take advantage of that. Typing from behind your keyboard is a good way to dip your toes into a new community, but for a richer human connection it’s nice to chat via voice.

I’ve noticed many patient advocacy networks adapting to this technology too, with some hosting virtual hangouts for those with a connection to the disease they serve.  One such example is the Encephalitis Society, which facilitates Zoom calls between groups of people impacted by encephalitis.

Keep in mind that it’s normal to feel a level of discomfort when joining a new social group. Don’t be discouraged if you can’t find the type of connection you’re looking for right away. Forming social bonds takes time.


community, people, social connection

Wrapping Up

While this post started off as an exercise to reduce coronavirus-related anxiety, there are plenty more benefits to finding community. I’ve already mentioned that social connection contributes to overall wellbeing. And in the context of chronic illness, I would argue that giving and receiving support from others is one of the best ways to immunize yourself against the emotional impact of health setbacks.

When I’m going through my worst, some of my suffering is blunted knowing that I can help someone else in the future. Inevitably someone will encounter something similar; there is some peace in knowing that my lived experience can be turned into a piece of writing someone can learn from, or that I can provide an understanding ear to someone who needs to vent.

When I’ve felt lost after a setback and unsure of what to do next, some of my suffering is blunted knowing that I have a community to fall back on. I can find guidance from someone who has walked a similar path, or at least find comfort in knowing that my frustrations will be heard.

So whether you need to take your mind off of coronavirus or wish to enrich your overall wellbeing (with or without chronic illness), I urge you to find a community. Find people you can talk to. There’s a lot of factors beyond our control right now, but your social connections is one thing you can actively work on improving.

You can also connect directly with me too. Leave a comment below, or find me on Twitter and Instagram. I’d be happy to hear from you!

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The information on this site, such as text, graphics, images, and videos, is designed to provide a patient perspective on understanding and living with a long-lasting illness. It is for general informational and entertainment purposes only, and does not serve as a substitute for consulting with your own healthcare professionals or conducting your own research. It is not intended to serve as medical advice, or to be used to diagnose, treat, cure, or prevent any disease. While every effort is made to provide accurate information on the subjects discussed, no responsibility is assumed for any errors or omissions in the content. Always seek the advice of a qualified healthcare professional to assess and guide your medical care.

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