Let Your Voice Be Heard: National Chronic Illness Awareness Week

 

National Invisible Chronic Illness Awareness Week starts in just a couple of weeks, Sept 13-19, 2010. 

Despite the fact that the majority of the US population looks rather healthy, statistics show a different story. Nearly 1 in 2 people have a chronic condition. This could be an illness like cancer or rheumatoid arthritis, or a condition such as arthritis, migraines or fibromyalgia.

When studies are done about people with illnesses and disabilities, those who deal with chronic pain on a regular basis, are often overlooked.  Spoonies stand proud and unite in our fight to educate the public about our “invisible diseases”!

What will you do during the week to support National Chronic Illness Awareness Week?

Ideas:

  • You can blog about your chronic illness.
  • You can help a friend who has a chronic illness.  Need ideas, click here.
  • Send a card for no “official” reason… just to make a chronically ill friend smile.
  • Send a letter to the editor of your local newspaper.

Any More Ideas? Comment Below:

©2024butyoudontlooksick.com

  • A PERSON WITH A CHRONIC ILLINESS ARE NOT UNDERSTOOD BECAUSE AT TIMES THEY ARE ALWAYS BEING TOLD BUT YOU LOOK SO GOOD, HOW CAN YOU BE SICK? I’M SURE THEY DON,T BELIEVE ME. WHEN I DO GO PLACES I PAY FOR IT. I’M USUALLY DOWN A FEW DAYS. ONE MORE THING THATS [ SAID ] WHO TOLD YOU THAT? ] I TELL THEM THAT I’LL SHOW THEM MY MEDICAL STATMENTS…..THAT USUALLY STOPS SOME..’ONE DAY AT A TIME EVEN ACOUPLE OF HOURS AT A TIME

  • Lisa

    Chronic Illness Awareness Week :
    You always read about chronic conditions:
    Cancer,RA, Migraines,Fibromyalgia, MA, and Lupus
    I have Scleroderma which gave me PH we need to get educate the public about this disease.
    I work in a hospital and my job is very stressful but I do like my job. I tell people never judge the book by it’s cover, the public just don’t know what we are going through.
    We need to take each day as it comes and be strong and never give up hope.

  • Christine, thank you for this notification. I plan to do a vlog on YouTube. I’m relatively new to Lupus & Fibromyalgia (diagnosed Dec 2009…I actually never mention the FMS because people think that’s in your head) but I’ve had mobility/pain issues since a major car wreck in 2003. I’ve had someone say “Oh that’s a joke” when I was getting out of my car in a disabled spot. I was so angry I let him have it. I was young and LOOKED like I was in perfect health. I am so glad that I had a mother who taught me early on you never know what someone could be experiencing.

  • CarlyRM

    My IBD support group meets on the 14th and I will be sure to mention this to everyone then!

    Maybe instead of handing out full brochures (great idea, by the way), people could make up business cards with some quick info about your illness and a link to a reputable medical website for more info in people are interested? You can get business cards that you can print up at home, or online printers can often do a few hundred for around $20.

  • I LOVE the idea of the brochures as well! And I’m so happy there’s a week dedicated to educating people about our struggles. For all of us spoonies who tire of the stares and judgment, this awareness week is a chance to be heard. To be understood and perhaps even to spread the word as far as we can personally.

    I wish there was a way to turn Christine’s Spoon Theory into an actual short film. Actors playing the part in a diner with the swiped spoons. Add to it the flashes of the painful moments getting out of bed, losing spoons to regular tasks, and ending with a montage of faces. Faces of spoonies, regular people in need of understanding.

  • When I had a fractured wrist (hence a series of sugar tong casts wrapped in ace bandages) and put my arm in a sling when I went out so I would remember NOT to over use my right hand/wrists, folks responded by opening doors, holding doors, helping me lift my grocery cart contraption on and off the transit trains.

    Along with the very visual cue of a sling/cast, there were the invisible illnesses of chronic pain, exhaustion, etc. that still effected me. Once the visual cue of the sling/cuff was gone, I found less doors held open, less help lifting/carrying things, seats offered in subways, etc.

    This really brought home to me how folks assume so much based on what they see. We need to make people aware that there are equally “crippling” diseases that you can’t see, can’t touch. Invisible Illness Week, and the stick-note campaign help to bring awareness and education.

  • Christine, thank you for sharing this… the comments above brought tears to my eyes! And the irony is my 42nd birthday is the 19th – there are 2 other birthdays up there in the comments! (I didn’t plan it that way either, have been doing this since 2002 and think this is the first time it fell on my birthday) Thanks for all of your help, awareness and making a difference in the lives of so many!

  • Tammie

    re brochures……some online friends & I made some about ME/CFS for the whole disabled parking issue, but I think they are good for any reason for spreading awareness

    …..anyone who would like to print these up & distribute them is more than welcome….they need to go on size A5 paper with the image on one side & the words on the other – they look huge when you click the link, but they are really not that big ( also, we went with CFS/ME rather than the reverse becasue in the US more people have heard of CFS)

    http://home.earthlink.net/~bunnymom1/CFS%20ME%20brochureA5.pdf

  • This Notice of Chronic Illness week brings tears to my eyes.
    I have resorted to hiding out in my house, it is so hard to hear,, “But you don’t look sick”. I respond “What does sick look like?”
    I have tried so hard to spread education with brochures from the American Pain Society and from the CDC, but I always get a puzzled look. I am very fortunate that I have a good team of doctors to help me to learn and accept my illness, RA and FibromyalgiaIIalong with the other neuopathic things that go with it. It has been a long struggle for me to accept and educate my own self.
    Thanks to all that made this happen
    Dennise Whitmore

  • Louise Broda

    CDS Facts: no need to wait for a minimum 1k run anymore! Most quick printers now do on demand printing that is every bit as professional as conventional printing. Office Depot, Kinko’s/FedEx, and even many local small shops do this now! I think the idea of keeping brochures in your car for those occasions is a fantastic idea! I may steal it myself! I could actually print ten or so at a time on my inkjet printer for very little cost. Two sided brochure paper is very reasonable. Thanks for sharing that!

  • I’m so thankful for blogs / websites such as this! While I have really great support from my family, it still is an uphill battle dealing with Fibro along with several other chronic illnesses! I’m a nurse & have been greatly discriminated against from those in my profession! I’ve been denied a job due to my illnesses, which in today’s economy is very difficult! I am becoming a huge advocate & try to educate all I can! Thx again for a place to go & connect with others who understand!

  • “Education to those who don’t know or understand is our biggest step forward. I say come out of the shadows and enlighten.”

    YESSSSSSSSS! The friend who taught me everything I know about living with a disability keeps a box of brochures in her back seat. If someone criticizes her for being “a healthy young woman” illegally parking in a crip space, she gives them a lecture and a brochure about her disease.

    Just seeing that there’s a professionally-printed brochure about it seems to give it legitimacy in some people’s eyes.

    I do up a Xeroxed brochure every couple years for advocacy purposes (one year it was that research is not making it down to the treating doctors, another year it was the scare tactic that this could happen to you), but haven’t yet rustled up the cash to do a slick brochure with a photo on the cover. The one I have just looks like your average crackpot literature, and therefore is not all that good for convincing people that CFS is real.

    I’d heard rumors about something coming (i.e., XMRV research) that I was holding off on getting that 1000 minimum print run until we had the research in hand. As more info comes out, and now they want to change the name to HGRV, I’m glad I waited. When I finally get around to doing one, I’m going to do it right and make it something we can use for years. Since it’ll take me that long to distribute 1000…..

  • Amy Combs

    This is a great week to do this! Except my birthday falls on the 20th….can we extend it one more day? I have both Chiari malformation 1 and Fibromyalgia. Because I look fine, most people dont understand the pain and fatigue that I deal with on a daily basis….my hope is that we can get the information out so that more people understand what sufferers of chronic “invisible” illnesses go through!

  • Joseph James Walker

    “Come Out” to your friends and collegues who may not understand what you’re going through. Talk to them the toll your illness takes on your body, but on your mind and the loved ones who support you. The more people who know, the more people who realize we really ARE sick.
    I make sure every person who asks me why I can’t walk properly, why I take so many pills, why I have a hard time breathing, or why my face looks red and ruddy that I have an auto-immune disease that has racked my body… and that it has a name… Polymyositis.
    Education to those who don’t know or understand is our biggest step forward. I say come out of the shadows and enlighten.

  • Lisa Mitchell Bradshaw

    Interesting that this was the week picked for this cause! I have a Dermatologist appointment on the 13th, and my birthday is on the 19th. I really hope this cause will help raise awareness about these ‘hidden’ illnesses! I have Lupus, Sjogren’s Syndrome, and a host of other autoimmune diseases.