BlogHer - Invisible Chronic Illness Week - Comments

Invisible Illnesses

AnnieMetalWoman — Tue, 28 Oct 2008 02:55:14 -0500

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.

great opportunity

dianaelee — Sat, 13 Sep 2008 00:20:00 -0500

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

So thoughtful and important

Candelaria Silva — Wed, 10 Sep 2008 23:54:50 -0500

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!

UC to J-Pouch

marsupial — Wed, 10 Sep 2008 12:38:06 -0500

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/

Ah Pouchitis

Denise — Wed, 10 Sep 2008 12:34:57 -0500

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

marsupial — Wed, 10 Sep 2008 12:13:50 -0500

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.

UC

Denise — Wed, 10 Sep 2008 11:20:39 -0500

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

My pet peeve

Denise — Wed, 10 Sep 2008 11:15:17 -0500

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

Invisible and closeted

Denise — Wed, 10 Sep 2008 11:13:38 -0500

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

"Unemployed"

Denise — Wed, 10 Sep 2008 11:12:27 -0500

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

Earning that t-shirt

Denise — Wed, 10 Sep 2008 11:10:15 -0500

I've earned it too, my friend and I know exactly what you mean.

~Denise
BlogHer Community Manager

Flamingo House Happenings

It is difficult

Denise — Wed, 10 Sep 2008 11:08:16 -0500

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

Thanks for the heads up

marsupial — Wed, 10 Sep 2008 10:46:17 -0500

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.

Thank You

deegospel — Wed, 10 Sep 2008 10:05:02 -0500

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.

I have often wondered how to

L16 — Tue, 09 Sep 2008 17:27:07 -0500

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 Chronic Illness Week

Denise — Tue, 09 Sep 2008 15:34:24 -0500

"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?

Cinder Bridge:

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