Chronic Illness and Getting Out of the House: There’s No Such Thing as “Just Going Out”

When so much of your day is spent simply managing—managing symptoms, managing energy, managing what needs to be done and what will have to wait—you start to crave something different. A change of scenery. A little time outside the house. Something that feels less like managing life and a little more like living it.

But chronic illness and getting out of the house don’t always go together easily. Something that should be as simple as deciding where to go can quickly become a list of considerations, compromises and calculations.

That’s when my daughter will tell me she really needs to get out of the house.

It’s hard to admit this, but my initial reaction upon hearing this is often one of dread. Because I know what’s coming next. 

I ask her if she has anything in mind. More often than not, her answer is no. And it’s not because there isn’t anything she wants to do, it’s because there’s nothing simple to do. It’s because there’s nothing simple to do. Nothing that doesn't come with the possibility of negatively impacting her for days afterward. Sometimes it’s even just a thought too late in the day to prepare for that kind of outing. There isn't enough time left to prepare, go somewhere, manage everything that comes with it, and still get home before we've pushed too far.

While living in Florida means getting to enjoy the outdoors more often than many other places, for us it is extremely limiting. We need to consider temperature, humidity, and the chance of rain. The answers to those typically rule out any outside event or activity.

We also need to consider whether she has eaten yet, how close we are to her needing another small meal, will there be something there that she can eat, will we be out long enough that she may need to eat more than once. 

The calendar is also taken out. What else is planned in the coming days? Will today’s outing possibly interfere with future plans? Will her body have time to recover so she can actually make the next plans?

And we can’t forget about accessibility. Once you start navigating life in a wheelchair, you quickly learn just how inaccessible even the supposedly accessible locations are. 

Then there are the people. Crowded places create an entirely different set of problems. Navigating through a crowd can be difficult enough, but so many people simply don't know how to act around someone using a wheelchair. Or maybe they just don't care. People will push her chair out of their way, climb over her, or touch things attached to it. And crowds usually mean noise, which adds another consideration.

Here’s an example of something that happened just the other day. We were in line at a store. A woman was walking past everyone to meet her friend near the front of the line. As her hand moved to push the arm of the chair, it grasped the cup sitting in the holder. She grabbed it by the top meaning her hand grabbed the straw. My daughter gets sick very easily so once a stranger's unwashed hand touches food, it goes into the garbage. What made it even worse was that we had just purchased that drink and she had only taken a sip or two. She has a lot of difficulty when it comes to eating and finds that this type of drink is the only thing she can get down in the morning. It literally takes her hours to finish it. Not only was it a waste of money, but we were no longer in a spot where we could replace it. That could have been enough to throw off her whole day.

Then there’s my part. I’m self-employed and need to keep the business running. I have a family and a household to take care of. And I have medical conditions of my own.

My daughter understands all of this. If I tell her we can't go out that day, she understands. She never makes me feel guilty about it. But unless I already have a commitment that makes it impossible, I usually say yes.

Sometimes that means reorganizing my workday. Sometimes it means things at home don't get done. Sometimes I push myself when I don't particularly want to, knowing that I may physically pay for it later too.

Because it isn't really about being bored.

It's about wanting some spontaneity. Some fun. An adventure, even if that adventure is nothing more exciting than wandering through a store and getting something to drink.

Chronic illness has a way of turning those simple things into complicated things. An afternoon out becomes a calculation of weather, food, accessibility, crowds, energy, tomorrow's plans, her body, my body and whether whatever we're thinking about doing is worth the potential cost.

Wanting to experience life doesn't disappear just because accessing it becomes harder. And as complicated as getting out of the house can be, I don't want our answer to always be that it's easier to stay home.

Thank you to the patient who shared this perspective. The Living Radiantly Patient Perspectives series exists to give voice to the real experiences of people living with rheumatic, autoimmune, and chronic illnesses. If you have a story, insight, challenge, or triumph you'd like to share, we welcome your contribution. Together, we can help others feel seen, understood, and less alone throughout Clermont, Florida, and the surrounding communities. Click to submit: https://www.radiantrheumatology.com/patient-perspective