DYING: A Book of Comfort

Companion website about dying, bereavement, loss, grief — and aging with spirit

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Coping with chronic, rare,

and invisible diseases and disorders

Because I write about illness and medical research and the professionals who try to help those with medical problems, I find myself wanting to recommend links that don't really fit into the other categories on this site, or even into the concept of the site. And yet, those who come here are often grappling with the problems of chronic and/or invisible illnesses, which are not apparent to others, or rare illnesses or conditions, which are often difficult even to diagnose, much less treat. So I am going to add this category and hope that you will tell me about useful sites to link to -- so that you all can help each other. With invisible, or concealed, chronic illnesses (ICI or CCI), the kind of mutual support available directly or indirectly through the Internet is particularly important.

What are invisible illnesses? Illnesses that aren't apparent, so you expect the people who have them to be functioning normally--except they can't, because something about their illness limits them, and it may well be fatigue. Invisible chronic illnesses include anxiety and panic disorders, autism, bipolar disorder (manic depression), chronic fatigue syndrome, depression, digestive disorders such as Crohn's disease, fibromyalgia, Gulf War Syndrome, irritable bowel syndrome (IBS) lupus, migraine headaches, multiple chemical sensitivity, post-traumatic stress disorder (PTSD), rheumatoid arthritis, and various other health problems that cause multiple hospitalizations and are often characterized by waxing and waning symptoms.

What prompts me to add this section today is a notice about an Invisible Illness Week Blog, which is inviting guest bloggers on invisible illnesses. I'll start with links on that website.

I particularly recommend the book Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties , by Laurie Edwards, which among other things may give friends and families of those with chronic illness a sense of what they are going through.



Suicide Help Online
http://www.hopeline.com
http://www.spanusa.org

Suicide Hotlines
1-888-649-1366
1-800-SUICIDE
1-800-784-2433

"He began to collect vintage jazz records and in no time knew all the musicians and the groups they had played with. But this time he didn't 'display' his knowledge the way he always had before, the way, I'd read, most autistic kids did as a substitute for real conversation."
~ Judy Barron, writing about her son Sean's emergence from autism in There's a Boy in There, a fascinating account of a boy's childhood with autism, told by both mother and son

"The McCain plan could consequently trigger a move from comprehensive insurance toward thinner coverage policies that shift costs onto sicker patients."
~ Jonathan Oberlander in New England Journal of Medicine

"Many people with Asperger's have an affinity for machines. Sometimes I think I can relate better to a good machine than any kind of person. I've thought about why that is, and I've come up with a few ideas. One thought is that I control the machines. We don't interact as individuals. No matter how big the machine, I am in charge. Machines don't talk ack. They are predictable. They don't trick me, and they're never mean.
"I have a lot of trouble reading other people. I am not very good at looking at people and knowing whether they like me, or they're mad, or they're just waiting for me to say something. I don't have problems like that with machines."
~ John Elder Robison, in Look Me In the Eye: My Life with Asperger's, p. 151

"In a culture which loves the idea that the body can be controlled, those who cannot control their bodies are seen (and may see themselves) as failures."
~Susan Wendell, “Toward a Feminist Theory of Disability”

"Students who struggle with illnesses that unpredictably increase and decrease in severity such as asthma, chronic fatigue syndrome, lupus, rheumatoid arthritis, or illnesses with frequent hospitalizations such as cancer or heart disease, may have found it difficult, if not impossible, to meet the requirements of a conventional college program....A chronic illness is one that typically involves waxing and waning symptoms that interfere with the student’s ability to physically engage successfully in a college program."

~ The Chronic Illness Initiative

“Although telling someone they look good is often seen as a compliment,it feels like an invalidation of the physical pain or seriousness of one’s illness and the suffering they cope with daily.”
~Lisa Copen, founder of National Invisible Chronic Illness Awareness Week,

DYING: A BOOK OF COMFORT, ed. McNees



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