Living for the Good Things

Living with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control over your own health.

I live with narcolepsy, which is often misunderstood. As an invisible disability, society is hesitant to accept my disability as my reality. Effectively, I am not only fighting my own body at all times but also the world around me.

Coping when life with a rare disease feels heavy

This kind of life, living with a rare disease, can get heavy. Don't get me wrong – I am so grateful to be here, for endless reasons. But living in a body that limits my perception of time and space and all the struggles that come along with that can be disheartening at times. That's where accumulating positive experiences helps me.

It's important for me to appreciate the good parts of life. Doing this makes living through the harder times worth it. It also gives me something to hang onto, to think about the good parts of life.

There are so many little things that make life worth living. Reminding myself to stay engaged with the good things in life, even when the bad things are weighing on me, is difficult but not impossible.

Finding joy in using my skills

When I am feeling down, I like to engage in pleasant events to help remind me that life is worth living.

Some of these events can take many years, in the case of building skills. Some of my favorite activities that involve skill-building include playing piano or other instruments, practicing a new language (for me, American Sign Language), gardening (indoors or outdoors), outdoor activities, dog training, embroidering, writing poetry, crafting, sewing, painting, tinkering, baking, building, and more.

The options are virtually endless. Feeling masterful in anything helps me feel more confident and invested in myself as a person living with a rare disease.

Enjoying life's simple pleasures

Other pleasant events can be really simple and accessible. Some of these more simple pleasure for me include drinking warm drinks in the winter like tea and coffee, lighting candles, listening to music, going on walks, quiet evenings inside, reading comics, reading books or listening to audiobooks or podcasts, video-calling a friend, sunbathing, bird-watching, cooking, playing with my dog, and much much more.

All of these precious, simple moments add up and can help make living with my rare disease easier.

Engaging in community events

Pleasant events in the wider community can be great, too, though I am not able to engage in these as often due to my rare disease and how much it impacts me.

When I do participate in wider community events, they include things like going on vacation or sightseeing, visiting art museums and science museums, going out for drinks, going out to a concert, volunteering in the local community, spending time with friends, visiting a local arboretum to learn about local flora, and more.

Does living with your rare disease ever get heavy? What are some ways you like to accumulate positive experiences in your own life? Please share in the comments!