Five Hobbies for People in the Rare Disease Community to Explore

Whether you’re living with a rare disease or caring for someone impacted by a rare disease, it’s important to find self-care activities that work best for your lifestyle. While self-care looks different for everyone, hobbies may help you find a renewed sense of purpose and can improve your mental health, especially if you’re dealing with anxiety or depression. By taking time to try a new hobby or revisit an old hobby with modifications, it may even help relieve stress, enhance problem-solving skills and help improve your overall well-being.

Below we’ve highlighted five hobbies recommended by members of the rare disease community that can be incorporated into a busy schedule. We have also provided links to a few bonus hobbies and activities that you can try. Don’t forget – you can define your own self-care routine, so focus on what you can do rather than where you feel limited. Recharge, have fun and find your passion.

Any form of exercise can help release endorphins, which may enhance your mood, relax your body, and improve mental health. One fantastic form of exercise for people in the rare disease community is aquatic fitness, including swimming, which can offer numerous additional benefits and also serve as a social activity.

Aquatic exercise is low-impact and helps build endurance and strength without the heavy lifting, which is particularly beneficial for people with joint pain. Swimming can help increase lung capacity and breath control, which is great for people with respiratory challenges. Swimming and other forms of aquatic fitness can engage your whole body, and varied movements or strokes can also improve flexibility through twisting and stretching, all while within the buoyant environment of the water. And, in the right facility, aquatic exercises can be adapted to suit most individuals.

If you’re interested in exploring aquatic fitness, talk to an instructor at your local recreation center, doctor or water therapist to learn more and get guidance on what type of aquatic fitness may work for you. Regardless of your age or skill level, you can experience these benefits by participating in aquatic fitness as infrequently as once per week!

Painting, coloring and other visual art activities improve focus and concentration and help you take a break from everyday life. You don’t need to be an artist to experience the healing powers of making art. The physical action of art creation has the capacity to reduce tension and anxiety, particularly when combined with the opportunity to express emotions and thoughts that are difficult to communicate in another way.

Explore your creative side through painting, sculpting, making a collage or mosaic, weaving, knitting, or coloring. Visual art creation is a hobby that can be done by anyone with just a few basic materials, or even digitally on a computer, tablet or mobile device. Explore color, texture and shape or just doodle on paper. And, if you’re interested in further exploring the therapeutic benefits of art making, you can contact a local art therapist.

Whether you enjoy music through listening, playing, dancing along, composing or mixing, it can be enjoyed from anywhere and by anyone. A nearly-universal language, music has been used as a way to communicate and express emotions for thousands of years. And the music we surround ourselves with can impact our mood, concentration and stress levels; it’s even been shown to reduce agitation and improve behavioral issues in people with dementia and to calm nerves for children undergoing medical procedures.

To listen or dance along with music, all you need is a mobile device, a computer, a tv or even an old-school radio. There are dozens of options for music streaming, including apps like Spotify, Pandora, Tidal, iHeart, YouTube, Apple Music and Amazon Music, as well as cable music channels, radio and more. The options of music you can enjoy is nearly endless – everything from upbeat to improve mood, or relaxing to help reduce stress and increase focus.

People in the rare disease community can explore singing or playing an instrument as a cathartic way to relax, recharge and enjoy music. Most park districts or local music stores should be able to connect you with an appropriate teacher for your experience level, instrument or voice. There are also a wide variety of resources online to help you explore what instrument may be right for you and help you get started.

And if you are the type to always have a song in your fingers or toes, maybe composing or mixing music may be up your alley. You can use a computer to mix samples and create your own beat, or give songwriting a try!

Don’t forget to check out the #RAREis Playlist and these Five Songs That Inspire the Rare Disease Community to see just how powerful making music can be for members of the rare disease community.

Mindfulness is a state of awareness of the present and acceptance of how we feel in our bodies. Meditation and yoga are two practices that can help us tap into mindfulness and intentional breathing.

Meditation has been shown to lower levels of cortisol, the hormone associated with stress, improve sleep and help individuals manage negative emotions. Meditation on a regular basis can help establish neural networks in the brain that help improve memory and concentration. If you need help getting started with meditation, you can check out a book from the library, watch videos on YouTube or download and use one of dozens of free apps, such as Insight Timer or Calm, which provide guided meditations and talks from the top experts in mental health and mindfulness.

Yoga incorporates stretching with meditation to help your body and mind spiritually and physically. This activity has been proven to help with chronic back pain from improved balance and flexibility, ease arthritis symptoms, and reduce levels of stress and inflammation in the whole body. Yoga classes can also provide a support group of peers. Many gyms and recreational centers offer classes for various levels and most yoga instructors can help with adaptations for physical constraints or challenges. If you would rather try this hobby from the comfort of your home, there are hundreds of options online and through YouTube, including Yoga with Adrienne and CosmicKids Yoga.

Psychologists say spending time in the kitchen can help relieve stress and improve mental health. Cooking and baking can be a great opportunity to be creative, connect to memories and people, distract from daily life and engage all of your senses. Cooking at home may also help lower your intake of processed foods and establish a daily routine, which many people in the rare disease community find helpful.

Select a cookbook filled with recipes you’d like to try, or search online – with thousands of recipes, sites like All Recipes, Yummly, or Epicurious can help you quickly find the recipe that’s right for you. There are also sites run by care partners and chefs focused on sharing recipes for specific dietary restrictions or rare disease conditions, such as Cook for Love. Similarly, Through the Fibro Fog was created by Claire, a member of the chronic illness community, who has found a passion for cooking and sharing her recipes and tips online.

If you’re looking for more blogs and articles for recipe inspiration or on cooking with dietary restrictions, try visiting these sites:

• The Kidney Dietitian – Your Expert for Kidney Stone & CKD Nutrition
• How to Start Cooking At Home – Cooking Tips for Beginners Cooks – How to Start Cooking for Beginners — Eatwell101
• Cooking with a Physical Disability | Kitchn

Interested in finding other hobbies beyond the ones listed above? Check out these resources provided by rare disease community members:

• 22 Hobbies for People with Chronic Illness
• 8 Tips for Enjoying Hobbies With Fibromyalgia and Chronic Illness
• 13 Simple Hobbies for Individuals With Chronic Pain
• 39 Things to Do Instead of Watching TV When You Have a Chronic Illness
• The Value of Pursuing Hobbies When You’re Living with a Chronic Illness
• When Chronic Illness Takes Your Hobbies Away