Invisible Chronic Illness Week
by Denise"But you don't look sick" is the name of a site that focuses on living life to the fullest while having a chronic illness. It's also a phrase that millions of people living with invisible chronic illnesses hear far too often. What are people thinking when they say that? Do they intend it as a backhanded comment? Or do they mean something else?
Chances are you've tried to explain what's really going on with you. But not everyone believes it: You could go back to work if you were willing to tough it out. You don't LOOK sick, so it must be all in your head ... or worse, you must be making it all up to get attention and a free disability check. So now you're not only stuck with constant pain, but you don't receive the support you'd get if you had diabetes, or multiple sclerosis, or some other "legitimate" disorder.
Lemon-aid has some suggestions about how to talk about invisible chronic illness.
Communicating about Illness is not easy. ( Finding appropriate words to say to someone in times of any adversity can be difficult for all of us.) The adversity of Chronic Illness, continues on indefinitely, making communicating about it even more complicated.
Many, many health bloggers are trying to spread awareness and support by bloggingfor Invisible Chronic Illnesses this week. What are "invisible chronic illnesses"? The sassy lime tells us:
nearly 1 in 2 Americans have an Invisible Illness. And 96% of illnesses are invisible. so the chances that you know someone with an invisible chronic illness? Really, really good. We’re talking about diabetes, cancer, depression, back pain, migraines (hello!), chrohn’s, etc., etc. I could go on and on
Bamagal was recently diagnosed with fibromyalgia and osteoarthritis:
As someone with a new diagnosis of fibromyalgia and osteoarthritis, I'm already receiving flack from friends and family who just don't "get it". The Bipolar, they understand. The severe seasonal depression they understand. But the chronic pain and complete lack of energy they are having a hard time accepting.
The Muse Asylum blogs about the stigma and skepticism of invisible chronic illnesses, like depression and anxiety.
My point was going to be that it’s a double whammy when you have an invisible chronic illness and that illness is psychiatric in nature. The first whammy is that it’s invisible;
The second whammy is “psychiatric in nature”.
Laurie asks what's in a word?
I’m happy to participate in Invisible Illness Week as a guest blogger and seminar presenter this year, and have been thinking a lot about the term “invisible” a lot lately. (What can I say? I am a semantics dork. But you already knew that.)
After all, it’s the word “invisible” that sets this whole movement apart, that makes an enormous difference to the many, many patients who live with diseases they feel but others cannot see.
I could go on with these links or I could tell my own stories about living with a partner who has a invisible chronic illness but instead, I'd rather you tell your stories and share your links.
One of every two Americans has an invisible chronic illness... that means you, or someone you love - let's talk about what that's like, for you.
~~Denise
Flamingo House Happenings
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Comments
It's difficult to feel another person's pain
As much as we all like to think that we are kind and generous and understanding, people can only truly understand their own experience. It is very difficult to put yourself in someone else's shoes. Especially when pain is involved.
I don't have personal experience with chronic illness, but I recently came across this blog post that was written by one of my readers, about his wife's chronic illness. I thought it was beautiful and inspiring:
Life Expectancy: Five Years
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I blog at MomGrind
I manage my kids' activities at UpToUs
It is difficult
It is actually pretty much impossible. Without shared experiences we just don't communicate very well and it seems difficult to give compassion or even just the benefit of the doubt.
Good blog link, thanks for posting it!
~Denise
BlogHer Community Manager
Flamingo House Happenings
Invisible Hurts..
Actually, I've had a couple "invisible" illnesses over the years:
I've suffered from depression (though fairly mild except when it got acute) since I was 11. When I would withdraw from friends and activities, they didn't really notice; we do make choices about participating, so they never put "depression" and "deb's gone quiet" together. But to hear "if you're depressed, just pick yourself up and get on with life".. when you find it takes all the energy you have to breathe? How do you explain that to someone who isn't experiencing it?
Then after a concussion, I spent several years with a very mild form of aphasia. Didn't even know I could get help for it. But nouns.. especially 3 syllable nouns would simply disappear from my memory. Except for a nice scar on my face, how do I explain that I broke my brain one day on the ice? How do you show a broken brain? How do you explain that you said a word 30 seconds ago, and now can't remember it for your life?
This year, I seem to be riding a something akin to a national epidemic of anxiety. I suspect I've really had it for years (it tends to go hand in hand with many depressions). This year, it's raised an ugly head as the primary offender.
Seeing other people sometimes helps; social interactions. But if the anxiety starts to make edgy and "skin-crawly" and I find my panting to catch my breathe, the answer is to take a very small dose of a drug, which then makes it illegal for me to drive. Though I feel and appear perfectly normal - and am a better human being (and safer driver) than without the medication - I have to choose to break the law and hope I don't get caught, or allow myself to be trapped in my house alone.
Invisible, I know you well. I've earned the t-shirt.
Debra
A Stitch In Time
Weight for Deb
Earning that t-shirt
I've earned it too, my friend and I know exactly what you mean.
~Denise
BlogHer Community Manager
Flamingo House Happenings
This makes my week...
I hadn't heard of the awareness week and am overjoyed to see it happen!
Two of my children have autism and I have fibromyalgia; it IS hard to field the comments or try to explain why you simply couldn't manage something that someone asked you to do.
I can't drive anymore and I work from home (sure looks like 'unemployed' to others) so of course I wonder what people say about us.
Oh WELL!
Here's to all our fellow invisibles! Cheers!
Susan
stonyriverfarm.blogspot.com
www.carersgroup.com
"Unemployed"
Now that's an interesting topic.
I don't have an invisible illness but work from home, doing a job that very few people really understand. I get a lot of questioning looks and I'm pretty sure there are people out there who consider me if not unemployed then "low employed". For those with invisible illnesses who do hold jobs that don't fit in with society's ideas of what a job IS, I can imagine you have an even tougher time of it than I do.
~Denise
BlogHer Community Manager
Flamingo House Happenings
Invisible Illnesses
I have several invisible diseases. From the spine, to diabetes, to fibromyalgia to name a few. My family believes, but it is hard to "understand" it. They fear the unknown. I have very few friends anymore, it is like I have something they can get. People tend to steer away from illness. They fear it.
I have often wondered how to
I have often wondered how to deal with this. Sometimes negative conversations come at work about people with depression and I don't know what to say. I live in a small town so I don't feel comfortable talking about my loved one's battle with depression. One day people were saying how people with depression are so selfish and horrible, and I tried to say that it doesn't mean someone is a bad person, it just means they are hurting. And the office jumped down my throat and was like how would you know? And I just didn't know what to say...because I would know - depression to my loved one is the most painful thing that ever happened to me.
Anyway, just another reminder to myself to try to be tolerant. There is so much going on with people that never meets the eye.
Invisible and closeted
Again, another great topic.
Many people with invisible chronic illnesses are also people with closeted invisible chronic illnesses and that makes their pain even greater.
Good topic, thank you!
~Denise
BlogHer Community Manager
Flamingo House Happenings
Thank You
Vist me at <a href="www.christianfiction.blogspot.com"> Christian Fiction Blog.</a>
I will definitely particiapte in this blogging event. I live with postpartum heartfailure and lupus. I am disabled and most people wouldn't know it unless I tell them. One time I parked in handicapped parking. I have a license plate for it. A man walks up to me and asks me where is my cane. "I said if the left side of my heart could use it to pump blood through I would do it." His wife apologized, but I'm used to it.
My pet peeve
I really really dislike it when people question (or attack) those who have handicapped plates or hang tags.
I know a lot of people do abuse the handicapped parking space but not everyone who doesn't have a visible illness or handicap is an abuser.
Bah humbug to those people!
~Denise
BlogHer Community Manager
Flamingo House Happenings
Thanks for the heads up
I will definitely blog. I suffered from Ulcerative Colitis, and the illness remained invisible for a long time, but eventually I did get so sick that it was apparent in my emaciated frame. Thankfully after a colectomy, I am no longer sick, but the experience will stay with me forever.
UC
My partner was originally diagnosed with UC and then later diagnosed with Crohn's. It's a difficult disease to help people understand, they really really don't want to hear the err details.
A colectomy. Wow. Have you blogged your experience with UC and the decision to have the colectomy?
~Denise
BlogHer Community Manager
Flamingo House Happenings
UC
During the ordeal, I was just too depressed to write about it, though I wish I had, especially because it was fairly recent--I had my colectomy in June 2007, and last October had a 2nd surgery to reverse my ileostomy. Basically that means I no longer had to wear an external bag on my abdomen to collect waste, and my internal plumbing was re-routed. I have talked my illness in bits and pieces on one of my blogs (http://pouchitis.blogspot.com), but maybe I'll do a more extensive piece for Invisible Illness Awareness Week.
Ah Pouchitis
I know the blog. I used to subscribe to it, during a time when we thought TW might be headed in that direction. I think I might have to re-subscribe!
~Denise
BlogHer Community Manager
Flamingo House Happenings
UC to J-Pouch
There is an EXCELLENT blog called "UC to J-Pouch Story," all about one man's journey, and it's super-informative. You should check that out for anything you'd ever want to know about the disease. http://ucstory.wordpress.com/
So thoughtful and important
bMy sister has lupus and has had it since she was in her early 20s. Sometimes her episodes weren't visible to people who didn't know her and they'd give her the double-take when she got out of her car with the handicapped license. There were times she wanted to roll up her pants legs and show people the craters and scars on her legs, etc.
Illness is a personal journey that loved ones can sympathize with and share but which can also be misunderstood by others. I have learned to allow my sister to share or not share this part of her reality as we meet people.
she's even had long-term colleagues who questioned how sick she really was in the years when her symptoms were kept at bay by medicines (who were slowly wreaking their own havoc on her body).
Thanks.
blog.candelariasilva.com
Good and plenty!
great opportunity
Invisible Illness Week has been an awesome opportunity to connect with other people in my situation. I haven't been able to listen to all of
the chats yet, but the ones I caught were incredibly helpful. I felt less
alone and isolated just by listening in and realizing there were many
other people in my situation doing the same thing at that moment.
Visit me at Somebody Heal Me: The Musings of a Chronic Migraineur