If You Have a Rare Disease You’ll Want to Try These 3 Things

Sometimes, focusing on creating something positive out of your rare disease/chronic illness experiences can help you move forward.

Here are 3 ideas for you to think about or try:

1. Start your own support group!

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If you’re an organized, extroverted person, consider starting a support group for other people who are going through the same things you are. (I suggest this for organized extroverts because as a disorganized introvert, the thought of doing this makes me want to crawl into a cozy dark hole and stay there! Too many moving parts for moi!). There’s a great wikiHow that takes you through the process step-by-step.

2. Create something! Anything!

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You don’t have to be a trained artist to use art as therapy. It doesn’t matter what you do, just channel your negative emotions into an external result.

The process of gathering materials together can focus your mind away from your rare disease challenges. And doing something methodical can be psychologically soothing. Btw, I’m talking gathering ANY materials! Paper clips/any darn thing you have lying around and glue! Pen/pencils/paint and paper! Mud and shoeboxes! If you want some specific ideas, there are some great ones listed in this article by The Huffington Post.

You don’t have to show your art to anyone if you don’t want to—remember you’re doing this for YOURSELF—but art borne of pain can be more powerful than you realize. More people might respond to it than you think (just don’t count on those closest to you responding… sometimes people need some distance from the subject to appreciate it).

3. Do something nice for someone

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When my kids were little and I was feeling down, we’d have “Flower for a Friend Day.” We’d put on our coats or flip-flops and either pick flowers from our garden or, more often than not—because my thumb is more a dingy grey than green—buy an inexpensive bouquet of mixed flowers at the grocery store. Then we’d either visit friends from my support group or just roam the neighborhood to give out single flowers to people we met, saying “Happy Flower for a Friend Day!”

If you find it difficult to leave the house, but you’re able to get online, email or send free e-cards to the people you care about, just because. Or contact organizations that depend on volunteers—animal shelters and support and advocacy organizations, for example—to find out what you can do from home to help them. Trust me, helping others can go a long way to helping yourself.



EmpatheticBadass is a young-at-heart writer from Ohio (Go, Bobcats & The Marching 110!)) who is passionate about being a voice for the patient perspective.

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