Isolation in Chronic Illness

Source: Katie Willard Virant

The COVID pandemic has taught us all that isolation is depressing and monotonous. We feel better when we have a change of scene, interact with others, and engage with the world at large. Unfortunately, people who live with a chronic illness will continue to struggle with being home-bound, even as COVID restrictions lift.

A recent research study examined the experience of public spaces in the lives of chronically ill people (Janicki, Ziegler, & Mankoff, 2021). The authors found that people who live with chronic illness often feel discomfort when they are away from home due to a distrust that public spaces will accommodate their needs. They therefore tend to stay at home, missing out on important experiences that occur when people share space (e.g., concerts, festivals, museum-going, lectures, outdoor activities).

While recognizing that everyone’s experience with chronic illness is different, the study authors identified common needs of chronically ill people that public spaces typically don’t meet. First, people living with chronic illnesses often require places to rest. Increasing available seating and including places to recline would improve their experience. Next, people with chronic illness have increased needs for predictability and privacy. Is it easy to locate and access rest areas, bathrooms, and food and water? Do rest areas and bathrooms provide private spaces such that illness needs can be attended to with dignity? Finally, do rest areas exist that purposefully diminish stimulation (sound, bright lights, scents, crowdedness), such that people living with illness can take a break from activity and reset their nervous systems?

The study authors call on society as a whole to design public spaces that meet the needs of the chronically ill population. Recognizing that systemic change of this magnitude is slow-going, they also propose a phone app that provides detailed information on public spaces for people with illness. This app—which would provide locations of rest areas, bathrooms, and food and water—would give chronically ill people more control over their experiences in public spaces. I hope the study authors design and implement this app. It’s a great idea. In the interim, though, I’d like to offer some “do it yourself” suggestions regarding venturing into public spaces.

Acknowledge your right to use public spaces.

Often, people living with illness feel that their needs are a burden to others. “What if my slowness holds up the line?” “What if I am using the bathroom for too long, and others are waiting?” “What if I have a flare, and people become uncomfortable with my symptoms?”

I encourage you to wrestle with the urge to manage other people’s experience of your illness. Talk this through with a trusted friend. Are you underestimating people’s abilities to accept differences and adapt? Are you so invested in others’ comfort that you are short-changing yourself?

Plan, plan, plan.

What do you need to make an outing successful? Do you need to map out bathrooms, seating, food and drink options? Do you need to bring supplies to enhance your comfort (seat cushion, water bottle, healthy snacks)? Think through various contingencies so that you are prepared and feel more in control of your experience.

Enlist support.

The labor involved in an outing can feel exhausting. Can a friend help with both planning and execution? Asking for support requires vulnerability. Are there people in your life who you trust to support you in this way? If not, how might you go about developing those relationships?

Start small, if necessary.

Often, home feels like the only safe space for people living with chronic illnesses. If it’s difficult to imagine leaving the house, start small and give yourself credit. A walk around the block is a win!

Identify experiences that are especially important to you.

A music-lover may value going to a concert more than going to a museum. An outdoor enthusiast may prioritize being in the woods far more than an outing in a city center. Because it does take work to enjoy experiences in public places, you want to make sure the pay-off is something meaningful to you.

Keep experiences alive in your memory.

Take pride in navigating public spaces as a chronically ill person—it’s not easy. Take photographs; display mementos; tell friends about what you saw and did. These experiences nurture us, not just in the moment, but also in the remembering.