Books: An Often Overlooked Form of Rare Disease Support

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rare disease
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Feeling alone in your struggles is almost an inevitable side effect of living with a rare disease.

You’re unlikely to have a support group in a very close vicinity and while there’s usually some type of online forum, it’s not true for every illness. Friends may be able to act as a resource for support, but there’s nothing like talking to someone who has physically been through exactly what you have.

In lieu of support groups or other resources, or at least in the intermittent times between your interactions with them, books can be a good place to turn.

While it is admittedly uncommon for the media to highlight rare diseases, there are some publications out there. In addition to a few movies, there’s a myriad of books that address chronic conditions. However, when picking between the two, you may find a book more rewarding.

Movies can sometimes cloud our perception and put images in our mind that don’t actually mesh with our true experiences. Books, however, allow our imaginations to run free and make deeper connects with the characters or the author.

Even if you can’t find a book specializing in your specific chronic illness, it’s likely you’ll at least be able to relate to some of the characters’ experiences in it.

After reading the book, we can go back to the forums we do have access to and continue the conversation of our illness, perhaps with the added commentary and analysis of a novel.

The Pain Doctor provides a list of 50 books to get you started. Some you may already know about like The Secret Garden by Frances Hodgson Burnett or The Fault In Our Stars by John Green, but chances are you’ll find something new that sparks your interest! Here’s some of them:

Here are some of them:

  • Handle With Care by Jodi Picoult
  • Life Disrupted by Laurie Edwards
  • The Two Kinds of Decay by Sarah Manguso
  • How I Got My Wiggle Back: A Memoir Of Healing by Anthony Field

They’ve even included some children’s books because unfortunately, rare diseases can affect anyone.

  • Molly the Pony by Pam Kaster
  • Just Because by Rebecca Elliott
  • All Kinds of Friends, Even Green! by Ellen B. Senisi
  • Goose’s Story by Cari Best

Swing by your library on the way home, or pull up your Kindle account to snag one of these titles. Because the other good thing about a book is: there’s no harm done if you don’t like it.


What book has really helped you with your rare disease? Share below!

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