Image description: Image of a bedroom, where you can see the headboard and bed front on. Above the headboard is a collage of pictures in the shape of a heart. 

For the last six months, I’ve spent the majority of my time horizontal, laying in bed. It isn’t by choice — three years ago, I was diagnosed with post-viral myalgic encephalomyelitis, or M.E., after a series of viral infections left me with bouts of muscle weakness, severe breathing difficulties, tachycardia, and persistent flu-like symptoms. It became a challenge to walk, stand, and sometimes even sit upright. During difficult episodes — like the one I’ve been in lately — I spend full days just resting.

The stillness my chronic illness demands of me often comes with heavy emotional consequences. I’m susceptible to grief, hopelessness, and rage about my condition, its severity, and the lack of treatment available for it. The truth is that M.E. has fundamentally altered the shape of my life. The traditional venues where I once found fulfillment, like employment, sports, socializing, and traveling, are no longer accessible. I’ve needed to find joys which fit in a smaller world.

As the years passed, I’ve collected more and more ways to find happiness from bed. It’s given me space to breathe. It’s not like I’ve eliminated the more difficult emotions — they’re valid, and an understandable part of chronic illness. It’s more like I’ve carved a space for lighter ones.

In the list below, I’ve categorized my bedridden joys into different sections: self expression, community, entertainment, outdoor connection, and comfort. Keeping the prevalence of dynamic disability in mind, each category covers a range of activities — some which I do with higher energy levels, and others which I can do anytime.

Self expression:

When I express myself through modes like art, writing, journaling, sketching, doing makeup, or anything I’m able to do, it’s consistently a grounding experience. Since chronic illness takes away so much of my life, I experience self expression as an act of reclamation — proof that I still exist, and I’m leaving an imprint on the world.

Journaling, for example, encourages me to examine my emotions, exercise my creativity, and put my consciousness on paper. It reminds me that even if my life is small, it’s still a life, a life with a story.

When it feels stressful to write, sketching and coloring are particularly fun forms of expression. I’m not an artist, but I love to draw things I imagine, my memories, or my favorite characters. It doesn’t have to be perfect, just joyful.

Surrounded by four white walls, I also try to infuse as much color into my life as I can. Color is an invigorating form of creativity. It can be showcased in outfits, makeup, nails, journals — wherever. I like to use it to embody my mood for the day.

Self expression, no matter the form, tends to connect me both to myself and to the rest of the world. When I engage in it, I’m reminded that chronic illness has not taken me away from humanity. I’m still here, still part of it all.

Community:

Engaging with virtual community fills me with love and vitality. It reminds me that others see, understand, and care about me even if I’m unable to leave my bed and physically see people.

I love to call my friends, even if I don’t have the energy to speak. It means the world to me to hear about their lives and be close to them emotionally — personal connections are so valuable and vulnerable, and they remind me how gentle life can be.

Sometimes, if I’m craving the sensation of walking around other people, or being in a room of strangers, I like to play games. I love comforting mobile games, especially ones that emulate a neighborhood. I often miss the sensation of walking around my city, visiting the parks and libraries which hold my fondest memories. These games aren’t a substitute, but they help fill a gap in my heart.

And of course, social media is a fantastic way to stay connected while bedridden. I’ve met wonderful members of the disability community over Instagram and Tik Tok, and found a niche of people who understand and empathize with what I’m going through.

Community, in all its forms, is not only a way to remind me I’m not alone — it’s also a way to remember my presence matters, and has an impact on other people.

Entertainment:

Although community and self expression are wonderful ways to stay grounded, I often feel the need to escape too. Spending months bedridden can be devastatingly brutal, and finding stories and other worlds to plant myself in grant me some reprieve from harsh realities.

I love to read webcomics, stories I can scroll through on my phone, or ebooks. When my energy is lower, though, I gravitate towards short stories, reading them one at a time, taking the words in slowly.

When I’m feeling well enough to sit upright, I enjoy watching shows, especially calming, predictable ones. Low stress activities are my favorite way to disengage.

Sometimes, if I can’t keep my eyes open, I like to lay down and listen to songs, ASMR, or instrumentals. Lofi beats are my favorite — they’re rhythmic, peaceful, and often contain comment sections full of supportive messages. I can put them on and lay down for an hour, escaping into the world of music.

I’ve found entertainment is crucial not only to stave off boredom, but also to facilitate a safe and low-stress place to relax in, which everybody deserves to have.

Outdoor connection:

One of the most heartbreaking aspects of being bedridden is the lack of contact with the outdoors, and all the small natural beauties that make up so many abled people’s everyday lives. I ache for the feeling of stepping in soil, brushing past rustling leaves, spotting birds pecking food off of the sidewalks, and allowing air and sunlight to surround my body.

Sometimes, the best way I can achieve a connection with nature is by spending some time looking out the window. I tend to notice details when I spend sustained time observing — butterflies, bugs, and the occasional bird.

Virtual communities can also step in to help facilitate outdoor connection. Being taken on walks over a video call, being sent pictures of animals from my friends, and looking at animal photography pages on social media all help remind me of the awe-inspiring world I live in.

If I can’t handle the brightness, I put on playlists filled with rainforest or ocean sounds and close my eyes while listening. I imagine myself walking through the biomes one by one.

It’s a nurturing experience to remind myself I’m part of the Earth, and how beautiful and intricate this planet truly is.

Comfort:

A significant aspect of being chronically ill is learning to listen to your body — when it needs to rest, when it needs to stretch, when it needs food or water. When I do things which bring me comfort, I’m reminding myself that these needs are okay, and I shouldn’t feel guilty for having them.

Everything in this list brings me joy, but there are a couple of things which stand out as prominently comforting acts. One of them is eating my favorite food, drinking warm tea, or trying a delicious childhood snack. The memories held in food are deeply nourishing, and I love revisiting these cherished meals.

Physical softness ushers in a similar sense of comfort and love. I find that plush animals, a silky shawl, and a warm blanket all help me feel like I’m safe and rested. Textures and scents are low-energy ways to feel anchored — my favorite lavender lotion or ginger balm feels calming to rub between my wrists.

Although memories can sometimes be achingly difficult, I find scrolling through old photos and remembering fun times I’ve had in the past can actually be a wonderful experience. The old joy comes flooding back, and I remember all the worlds I’ve held.

I often existentially struggle with living with high support needs. Comfort is a reminder that I am not only allowed to exist as I am, but welcome to. Everyone deserves to feel joy.