In the almost ten years that have passed since I was first diagnosed with chronic illness, I have come across many amazing resources for fellow illness warriors and their loved ones. These resources help to promote education, awareness, and support. If you know an awesome resource that should be added to this list, please let me know!
But You Don’t Look Sick – The Spoon Theory
Christine Miserandino is the founder of But You Don’t Look Sick and the creator of The Spoon Theory which has helped millions of people across the globe find a way to educate friends and loved ones about life with chronic illness. If you’ve ever heard of the word “spoonie,” this is where it comes from. She founded But You Don’t Look Sick (BYDLS) as a resource for those living with chronic illness (who hasn’t heard that statement before?). The mission statement of of BYDLS is “We believe that our medical circumstances have put us in a unique and understanding position, so that we can help each other through similar difficult times. We hope the information and community on our site can aid people in leading better lives through knowledge, networking, friendship and most of all support” (source). At BYDLS, you can find helpful articles and resources as well as active forums.
WeGo Health is a social network built to create a health community online. Their goal is to “equip our network with opportunities designed for the active contributor, relevant content, powerful educational resources and shareable interactive media. We hope that the bloggers, tweeters, and community leaders that we call Health Activists will find inspiration, strength and support here” (source). Opportunities to be invoked as a Health Activist include joining the WeGo Health Press Corps, taking part in the weekly Health Activist Twitterchats every Tuesday at 3pm EST (#HAChat), and join the National Health Blog Post Month.
Lisa Copen founded Rest Ministries after noticing the lack spiritual resources available to those struggling with chronic illness. The mission of Rest Ministries is to “serve people who live with chronic illness or pain, and their families, by providing spiritual, emotional, relational, and practical support” (source). Rest Ministries provides daily devotionals for those living with chronic illness, materials and support for caregivers and friends, and resources to help churches develop chronic illness ministries. Lisa is also the driving force behind National Invisible Illness Awareness Week that happens every September. Is she superwoman or what?
ChronicBabe is another website that provides a wide variety of resources for babes dealing with chronic illness. Jenni founded ChronicBabe in 2005 to be a place where women with chronic illness can have the tools to continue to rock despite chronic illness and be a part of a kick-butt community. The definition of a ChronicBabe definitely echoes the goals of A New Kind of Normal to prove that chronic illness doesn’t have to stop you from being joyful, strong, outspoken, and all around fierce. Need a reminder of how awesome you are? Print it out and hang it next to your mirror. ChronicBabe has an archive full of amazing blog posts, an active forum, and a killer shop that includes tons of freebies (ChronicBabe Bingo anyone?). When you subscribe to ChronicBabe, you will receive a How To Be A ChronicBabe toolkit!
To Write Love On Her Arms
To Write Love On Her Arms (TWLOHA) is an amazing organization that strives to provide resources and tools for those struggling with depression, addiction, self-injury and suicide. While it may seem like an odd choice for some to list on a chronic illness resource page, we can not ignore the reality of chronic illness’s devastating impact on mental health with those struggling with chronic illness and pain. It is estimated that up to one-third of those diagnosed with a serious medical condition will struggle with symptoms of depression. The vision of TWLOHA are words that we all need to hear:
You were created to love and be loved.
You were meant to live life in relationship with other people, to know and be known.
You need to know your story is important, and you’re part of a bigger story.
You need to know your life matters.
TWLOHA provides resources to find help and hosts events to provide education and raise awareness.
People may think I have an over abundance of Pinterest boards but I feel like they are much more accessible and easy to use when they are broken down into specific categories.
Life With Chronic Illness – Advice, Encouragement, & Support – This board has links to devotionals, posts, and articles related to day to day life with chronic illness.
Awesome Products To Make Life Easier – Links to spoonie-friendly products such as gadgets, home products, and ways to keep occupied while you are stuck in bed such as adult coloring books!
For Caregivers & Loved Ones – Caregivers are so often overlooked or the burden they carry not acknowledged. There are also resources for friends and family members of ways they can support someone with chronic illness beyond casserole dishes 🙂
Finding the Humor – Laughing has been long recognized as the best medicine and sometimes when you deal with illness day in and day out, you just need to laugh.
Endometriosis – Resources, articles, and events related to endometriosis.
Fibromyalgia & CFS – Resources for Fibromyalgia & CFS
Show The Love – Fun gift ideas for someone you love with chronic illness
Words of Wisdom, Hope, & Inspiration – Posters and images with words of encouragement and inspiration
Gluten-Free Goodness – Tons of gluten-free recipes! Yum!
One comment on “chronic illness resources”
Thank you for following my blog, still in process…I am sending you a message to let you know I have M.S. I was a very active person til about a year ago. I am still getting around just fine..
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I wanted to share the links with you, as this may be of some benefit for you and your family….http://www.blackdiamondbuilder.com/deborahgunn
I simply wanted to share this info and thank you for your openness