Community, Friends & Family

Chronic Illness: When Families Just Don’t Get It

“I just feel you need to find your independence and if that means dying to come back to life so be it. Easy for me to say right? It’s crazy, one part of me says “poor girl” and the other says “suck it up” WTF! And you know I am not the only one thinking that!”

After getting an e-mail from her soon-to-be sister-in-law with the above paragraph in it, Never That Easy describes the feelings of betrayal and doubt that arise when family questions your illness.

Included in this week’s Grand Rounds, I wanted to be sure you saw this excellent post. It strikes a similar chord to the post “Insurmountability to Understand” Migraine.

Coping, Resources, Society, Triggers

Good Stuff From ChronicBabe

ChronicBabe is always an awesome site; recently it’s been overflowing with terrific articles and links.

Illness and Empathy for Others
In her latest contribution to ChronicBabe, Laurie Edwards (whose articles I love) describes how her illness influences her interactions with loved ones when they have a passing illness — both positively and negatively.

Work and Illness
Lily Thomas, who has CDH and migraine, writes about working with people who don’t really understand what your illness is like. And her experience sorting it out when her boss was the one who didn’t understand.

Emotions in Patient-Doctor Communication
“Emotional patients” have trouble remembering what their doctors tell them, according to findings of a recent study. The “emotional” participants in the study latched onto frightening or worrying information.

Keeping Cool
Heat and dehydration are big headache triggers. ChronicBabe gave this link for ways to cool off.

Acceptance
In an essay on NPR‘s This I Believe, Kay Redfield Jamison writes about accepting the role of bipolar disorder in her life: “It is not a gentle or easy disease. And, yet, from it I have come to see how important a certain restlessness and discontent can be in one’s life; how important the jagged edges and pain can be in determining the course and force of one’s life.”

Invisible Chronic Illness
Next week is National Invisible Chronic Illness Awareness Week. During the week, people who live with invisible illnesses are encouraged to educate the “general public, churches, healthcare professionals and government officials” about the frustrations of having an illness that others can’t see.

Thanks to Jenni and all ChronicBabe contributors for sharing coping strategies and great resources.