February 2018 Related Resources: Chronic Illness
RESOURCES RELATED TO LEFT NEGLECTED
Lisa Genova explains the neurological condition that inspired Left Neglected
Check out this for Left Neglected to help you get excited for the book interview and book talk
The Stroke Foundation explains the disruption having spatial neglect can have on their patients lives.
Sarah has a lot of guilt after not being able to return to work as soon as she expected. Some of the sentiments expressed in this article from The Mighty from others with chronic illness might resonate with her character.
"As someone who used to define herself vis-a-vis her work ethic, to become unable to act upon that work ethic is nearly intolerable." This article is a great look at the mental toll chronic illness can have on a person.
Sarah learns that her accomplishments don’t have to look like everyone else’s. They look different for someone with a chronic illness. Check out some of these Olympic athletes with chronic illness that show how everyone’s condition is different, but we all can accomplish goals.
Whether one has had a chronic condition for their entire life or just recently received a diagnosis, acceptance of a chronic illness can be difficult. Kate Jackson explains why she thinks it is important to accept your chronic illness , while Georgia Carr shows why it is not a straightforward process as you might think. Many compare it to going through the 5 stages of grief , however it is important to know that acceptance doesn’t mean giving up. It’s merely committing to rewriting your story and adapting to uncertainty.
Many people with chronic conditions utilize the Spoon Theory to explain how their bodies work differently with using and maintaining energy. (It’s worth the read to understand what “I’m tired” means to someone with chronic illness.) Christine Miserandino first posited the theory on her website. Tiffany Chilcote did a powerful photoshoot with spoons and pill bottles as physical representations of chronic illness in her everyday life. Many people choose to get a spoon tattoo as a way to start a conversation about their illness, to explain what life as a “spoonie” is like, or to always have an extra spoon around.
If the Spoon Theory doesn’t quite fit their needs, many with chronic illness use other analogies to explain their energy allocations. There is the idea of a phone battery or the tortoise vs. birds theory.
Sarah’s mother shows us how difficult being a caregiver can be. Here we have some tips for how to support a family member with chronic illness or pain. This listof what to do (or not to do) as a caregiver for the chronically ill from Psychology Today also provides some insight into life as a caregiver. While caregivers have an important job, it is vital that caregivers avoid burnout by taking care of themselves.
Even if you aren’t a caregiver, you can still support your friends with chronic illness with these tips.
Sarah learns that parenting with a chronic illness comes with a few more challenges than she had before. This perspective explains it a bit more.
Sarah learns that her illness does not mean she has to give up activities that she loves. Check out the multiple types of adapted skiing she could take part in and even watch a videot of them in action!
There are many great podcasts that talk about chronic illness. We’ve listed a few of them as well as some specific episodes below with a brief synopsis of what you can find when you listen.
Cara Gael, a 2016 Stanford Medicine X ePatient Scholar, has Ehlers-Danlos Syndrome Hypermobility Type, and hosts a regular podcast for all people with ongoing illness. Here’s the official description: “In Sickness + In Health is . . . about our relationships with our bodies, and issues at the intersections with chronic illness, disability, healthcare, and mortality. It is a show where the personal is political, and where bodily autonomy, healthcare, and disability rights are considered human rights without question.”
Adrienne Clements, illness advocate and empowerment coach, hosts Invisible Warrior Radio to provide simple strategies to manage the challenges of living with chronic illness. Through personal observations and professional interviews, the episodes have a cheerful, self-help tone and incorporate social psychology.
Shelly Jackson hosts Peaceful Body Coaching with a similar feel to Invisible Warrior Radio, but aimed at exploring mindful pain management. From the description: “Each week, Shelly will share simple and practical tools to help you reframe your relationship with chronic pain or illness.”
This American Life shares a riveting story of how one woman’s dedicated research into her own disease helped her diagnose an athlete with a different version of the same rare disease. “Something Only I Can See” explores genetics research and how patients often have to be the experts of their own diagnosis.
Terrible, Thanks for Asking covers many topics that are hard to talk about in everyday society. One episode, “Healing a Chronic Illness”, explores the impact of a traumatic brain injury on a family. Understanding how the family is learning to live with a new reality is potentially relatable for anyone whose life has been turned upside down by a diagnosis.
Host Cristin Downs of The Notable Woman Podcast interviews a finance expert who writes about chronic illness. In the episode “Living with a Chronic Illness with Julie Morgenlender”, the expert offers advice especially relevant to those who love people with chronic illnesses.
When Monica Michelle was diagnosed with Ehlers-Danlos Syndromes, she had to reinvent her professional life. She was also forced to confront social stigma and stereotypes around invisible illnesses. When using disabled parking, for instance, she received anger and accusations from others who couldn’t see her disease. So she created Invisible Not Broken to help educate the public and alleviate some of the isolation people with these conditions can experience. The show covers issues for a variety of invisible illnesses, addressing topics like denial and caregiving.
This episode of Out in the Open from CBC Radio-Canada delves into the stigma and effects of living with an invisible disability, disorder, or disease. Journalist Piya Chattopadhyay investigates what it’s like to have invisible illnesses like attention deficit hyperactivity disorder (ADHD) and eating disorders. The piece highlights the frustrations, emotional impact, symptoms, and struggles people with these disorders experience. It also illuminates what it’s like to get a diagnosis and how stigma can prevent people from getting much-needed help.
Natasha Lipman is no stranger to invisible illness. Lipman turned to blogging after being diagnosed with one chronic illness after another. These include Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, histamine intolerance, myalgic encephalopathy, and depression. She talks about what it’s like to be young and ambitious while living with these illnesses. Her new podcast Spoonie Pyjama Party is intended for other young people living with chronic illness, and it covers a range of topics from sex and relationships, to confidence to inspiration.
Have You Tried Yoga? is just one piece of unsolicited medical advice you might receive if you have chronic pain. It's also the name of the monthly podcast of two 20-somethings, Emma and Georgia, who experience chronic pain! These two Aussie pain-killer babes explore issues such as unsolicited medical advice, treatments that don't work and generally surviving, through sarcasm and guest interviews. Put on a heat pack, throw down some codeine and get ready to do anything but Child's Pose with Emma and Georgia.
Invisible Not Broken is an irreverent interview podcast for people with chronic illness, invisible illness, disability, and chronic pain.
RESOURCES RELATED TO CALEB AND KIT
Wondering what exactly is cystic fibrosis and what it entails? The Cystic Fibrosis Foundation has an extremely informational website describing symptoms, diagnosis, treatment, and everything in between. It is a great resource to use and refer to when learning about Caleb’s symptoms. We really encourage you to read the portions of the website that describe caring for a child with CF and daily life.
Hip-hop dancer Ryan Morrissette uses his talent to spread awareness for cystic fibrosis.
Claire started as a teen shared openly about her life with cystic fibrosis, and she has continued to spread awareness in her twenties. Her video on body image as a “sick kid”and her recent TEDx talk about her experiences really help understand Caleb’s perspective in the book. You can learn more about how she supports families with cystic fibrosis at her website for Claire’s Place Foundation, Inc.
Caleb has to have nebulizer treatments for his CF. Here are some of the many ways those with CF treat their symptoms in order to improve lung function. The Frey Life also explains why airway clearance is important to their lives with a demonstration.
Caleb compares himself to Chris Evans at the beginning of Captain America. You can see exactly what he means in this short clip.
"Your old stick-in-the-mud Dad insisted on genetic testing to make sure I’m not a carrier before we start trying. The news came back last month. I’m perfectly healthy, and our baby will be, too!” (p. 80) Caleb’s dad talks about how he and his fiancé, Kristie, were tested for the gene that causes the condition. Learn more about that gene and how its mutation causes cystic fibrosis. You can also learn about the testing process from the Cystic Fibrosis Foundation.
There are several different reactions one can have to meeting someone with a chronic condition like cystic fibrosis. Check out the list of different types of friends one can encounter. Do any of these align with any of the characters in Caleb and Kit?
Caleb shares a bit of his dietary habits throughout the book, including some of his medications that help him digest his food. This website has a great visual on how Creon helps Caleb with digestion.
Derek explains that sometimes trees grow apart in order to better support each other. This actually happens! Some ancient trees in China show signs of “ripping apart” in order to grow better. Learn how trees talk to each other in this TED Talk from Suzanne Simard.
Kit thinks that Caleb may be a changeling. You can learn all about the legend of changlings and you can even check out Angelina Jolie’s movie Changling, where she is convinced her kidnapped child that was returned to her is not her son. NPR has a great article explaining the true story behind this movie.
Learn all about crows from PBS
This article about what love is when you parent children with disabilities could have been written by Caleb’s mother.
We found a few podcasts that talk about cystic fibrosis if you’d like to continue learning more. Check out Breathe In or Sickboy wherever you listen to podcasts. (And check out this perspective on what it’s like to listen to Sickboy as someone with CF.)