“30 Things About My Chronic Illness ” Meme

Last year hundreds of people participated in our “30 Things” Meme. We’d love to hear from you again (A new year may bring new answer, so even if you filled this out last year, we would love to see your answers this year, as well! ).

This is a great way to blog about your invisible illness too. We may say, “No one understands!” but have we really given them the chance to?

Fill this out, post it on your blog or on Facebook, etc. and then let your friends and family know. You may even be surprised to find out who you know who is living silently with his or her own invisible illness.

Be sure to comment below with the name of your blog and where it’s posted so we can come read it!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

Are you blogging for Invisible Illness Week? Be sure to sign up and let us know at Bloggers Unite!

Popularity: 19% [?]

Invisible Illness Week Now Accepting Articles For This Site

We have now opened up over submission page for articles and blogs to be featured on this website in the coming two months. I am looking forward to hearing your feedback on what it is like to live with a chronic condition that is invisible.

To submit your complete article, bio, and photo, click on the link above that says “Submit Article.”

Here are some of the topics we are looking for and your post should be trained 300 and 750 words.

• Our theme this year is “Deep Breath, Start Fresh” – what does this to you and how you live chronic illness?

What has your experience been in coping with…

• Physical needs that are not apparent to others because you look well
• Expectations from those around you, from your spouse to your boss, because you look well
• How your children perceive your chronic condition
• How you choose to reveal or not reveal the seriousness of your illness
• How you deal with your illness on a daily basis. When it is invisible is easier to deny the seriousness of it?
• The looks. . . when you park in a handicapped spot legally to when you explain your unable to walk very far
• Still finding joy in life despite some limitations
• How physicians and other medical care professionals don’t even understand that your pain is quite invisible
• How do have sought to bring awareness about invisible illness as in healthcare advocate
• How you have tried to explain to your loved ones about having invisible illnesses or a hidden disability
• and the list goes on!

We are eager to hear from you about the emotions of living with a chronic condition, how you have found yourself dealing with difficult circumstances, how you overcome the need to stay in bed and hide from the world are most difficult days, what ever is on your mind!

Before you submit your article you should have a third person biographies ready to go that is less than 150 words and contained only one week. If you submit more than this it will be edited and you may not be pleased with which part we keep. Please do not submit a link to your article on your website but rather the actual article, which you will copy and paste into our form. If it does not have the article in the form, it will be deleted.

And if you are talking about your illness or Invisible Illness Week we hope you will join our Bloggers Unite group so that other people can be sure to visit your website and read your postings.

Thank you so much,
Lisa Copen

Popularity: 9% [?]

Listen to Invisible Illness Week Workshops Any Time for Encouragement

Did you happen to make some of our podcast seminars during National Invisible Chronic Illness Awareness Week? We had some amazing guests as our panelists who contributed to a successful week of inspiration, information, and education.

One of my favorite emails from of listener that I just received this weekend says:

“I listened to the broadcast on Monday. I cried through the whole thing. I listened to it a few more times because I missed too much (crying). I felt so validated for the first time in 5 years. It doesn’t matter that my disease is a 1 in 200,000 what was discussed was common to all. I have no idea the hours of labor you put into the week or the finances or the physical cost to your body that such an undertaking had but I know it had to be great. I just want you to know that your labors made a difference. . . Just learning that what I feel is common to all who suffer with chronic illness made me realize that though I sometimes feel like I am isolated God is right there with me every step.”

Wow. Tears came to my eyes as I read her entire email (this is just a portion above) and then I printed it out and read it to my husband.

To all of you who helped me make this week possible, thank you.

Now. . . head on over to Invisible Illness Week podcasts at Blog Talk Radio to get some more encouragement. You may even find an episoide from 2008 or 2009 that strikes a chord with you too! You can also find our Invisible Illness Week programs in the Apple itunes store for free if you want to download them to your ipod.

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Popularity: 4% [?]

How You Can Help This Week! Things to Know

Monday, September 13, 2010 kicks off Invisible Illness Week!

There are many ways to get involved in the online activities of the week, but the most important thing to know is…

We will be having an online VIRTUAL conference. What does that mean? Each day, M-F, 10:30-12 PACIFIC you can go directly to http://invisibleillnessconference.com and you will be connected with our workshop automatically at Blog Talk Radio.

Each morning we will have a series of special guest experts who have dealt with illness in their own lives who will be able to answer questions and who will have some key talking points about topics such as coping with illness, parenting, getting organizes, relationships, setting boundaries, working, and of course, the whole “invisible” illness issues.

Here are some other ways to get involved:

Tell someone!
Do you want to email a family member, friend, pastor, counselor, support group leader, your favorite newsletter’s editor? Here is a short description of Invisible Illness Awareness Week – copy, paste, & share anywhere! http://ow.ly/2D1eo

If you have a blog:
Do our meme: “30 Things You May Not Know About My Invisible Illness” (Found here: http://ow.ly/2D1aQ ; Or blog about any invisible illness topic) and then sign up at Bloggers Unite so everyone can find your blog post at http://ow.ly/2D13m Be sure to grab the badge that you are participating too!

Grab the button for your site:
See bottom right side column with code at http://invisibleillnessweek.com

Read about our panelists/special guests:
See someone who you want to make sure your friends know about – be sure to let them know with an email and link to this page:
http://invisibleillnessweek.com/2010/09/08/conf-workshops/

Connect with others: Join the Sunroom group for Invisible Illness Week: http://www.restministriessunroom.com/group/invisibleillness

Download our free 80-page ebook!
20 Experts share their tips about living with a chronic illness. Just sign up for the daily updates from Invisible Illness Week at http://invisibleillnessweek.com (top right side of page), confirm “subscription”, and you will get the download link.

To read blogs of others:
Bloggers who have committed to blogging about invisible illness week or II topics are registered at Bloggers Unite at http://ow.ly/2D13m – Here you can get a description of their blogs too.

Do you tweet? Here are some great things to retweet!
http://invisibleillnessweektweets.wordpress.com

Give a donation!
Have you considered giving a donation to help with Invisible Illness Week expenses?  Every little bit helps if you are financially able to give. http://ow.ly/2D1sh

Check out the photos of where people have left sticky-notes this year! http://invisibleillness.com (right column)

If you are on Facebook:
Join our “Invisible Illness Week Cause” http://ow.ly/2D1GP
Be a Fan! http://ow.ly/2D1I3
Click the “like” button on any of our web posts at http://InvisibleIllnessWeek.com
RSVP to the “event” http://ow.ly/2D1A5

* Share anything (the Cause, Event, Group, etc.) with a friend!

Post this as your status!
Nearly 1 in 2 people live w/ a chronic condition, most of them invisible. If it’s not you, it’s someone you love. In recognition of Invisible Illness Awareness Week, http://InvisibleIllnessWeek.com post this as your status so someone who is suffering silently knows someone cares!

Popularity: 6% [?]

National Invisible Illness Week Features Virtual Conference This Week

SBWire-9/13/10– National Invisible Chronic Illness Awareness Week is September 12-19, 2010 and this week, Monday through Friday, the campaign features a virtual conference with one 90-minute seminar each day.

Listeners can log on to http://InvisibleIllnessConference.com to listen LIVE or later to the archived audio file. The seminars will also be available at itunes.com . To listen live, log on during September 13-17, 10:30 – 12 Pacific time; 12:30-2 PM Central time; or 1:30 PM – 3 PM Eastern time.

Topics include coping with illness, parenting, getting organized, relationships, setting boundaries, working, and of course, the whole “invisible” illness issues. Participants include best-selling author Pam Farrel, chronic illness coach Rosaline Joffe, and popular patient advocates Christine Miserandino or butyoudontlooksick.com and Jenny Prokopy of chronicbabe.com .

Over 20 speakers from all over the country come together to provide amazing workshops that are rarely available for those with illness who are unable to travel far for a conference or sit for extended periods of time.

The host of the show is Invisible Illness Week founder, Lisa Copen, who began this week in 2002 and has produced it each year since then. Lisa is the founder of Rest Ministries which serves the chronically ill and author of many books on chronic illness, including, “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.”

Invisible Illness Week offers many other ways to get involved including blogging for the cause, sharing invisible illness week facts on Twitter or Facebook, a Facebook cause page, and leaving anonymous sticky notes in honor of the campaign’s theme, “Each One Can Reach One.”

To find out more visit the web site http://InvisibleIllnessWeek.com .

Popularity: 3% [?]

Special Thanks for YOUR Help!

I’ve heard from more of you who have gone the extra mile in spreading the word about Invisible Illness Week and wanted to say thank you!

Sarah wrote to us and let us know she had sent out some press releases. “I have submitted my invisible illness article to our local papers and quite a few national ones, including Associated Press.” Thanks, Sarah! That does help so much!

And one woman said she was speaking at her church’s retreat about invisible illness. I asked her to share how that had come about. [I feel terrible I have searched everywhere for her name and cannot find it!] She emailed me back, “We have a ‘retreat’ and it is really not a retreat, it is once a month at the church and about maybe 8 – 13 ladies.  The group and the minister, mainly the minister arranges for speakers for each meeting.  Last year in honor of Pennsylvania proclaiming Women In Pain Awareness (WIPA) Month I offered to do a workshop on WIPA. This year I am making it invisible disabilities! All prayers are appreciated.

Lisa

Popularity: 4% [?]

Jason Shares His Outreach For Invisible Illness Week

Some of you are quite amazing in the ways you are grabbing onto Invisible Illness Week and running with it (I know, perhapd an odd expression if you’ve not ‘run’ in many years, but in your own way you ARE running! Thank you!)

One of these people is Jason Reid from sickwithsuccess.com . He also has a free ebook. At the age of 18, after nearly dying of complications from Crohn’s disease, an inflammation of the intestinal system, Jason enrolled in the prestigious journalism program at Ryerson University in Toronto, Canada. Jason now runs Sick with Success™ a company that offers chronic illness coaching and organizational solutions.

He wrote to me and said, “I have decided to use the week of September 13th to do a media blitz on invisible illness awareness and will mention Invisible Illness Awareness Week and yourself wherever I can. I am going to try to hit radio, TV and print across Canada, particularly in the Toronto area.”

Here is the video he did (it’s great to hear a MAN’S side of the story!). Thanks, Jason, for spreading the word and using your difficult experiences to encourage others

Lisa

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• Facebook Brings Those With Chronic Illness Together for Invisible Illness Week (invisibleillnessweek.com)

Popularity: 5% [?]

Invisible Illness Week Joins American Pain Foundation to Endorse the Virtual March on Washington

September is Pain Awareness Month. Pain affects more Americans than diabetes, heart disease and cancer combined, and is a leading cause of disability in the United States. Yet, it remains woefully undertreated and misunderstood, resulting in needless suffering .

This September, the National Invisible Chronic Illness Awareness Week campaign is joining with the American Pain Foundation to endorse the Virtual March on Washington to raise awareness about the barriers to accessing appropriate and effective pain management and the desperate need to improve pain care for all Americans.

Go to www.painfoundation.org/virtualmarch to participate in the march.

Opportunities to engage include:  writing your legislator, watching condition specific videos, chatting with others affected by pain and adding your voice to the 10,000 Voices campaign. You can also use resources in the PAM Advocacy Toolkit to host an event in your local community or get tips and templates for writing a letter to the editor. Go to www.APFActionNetwork.org to see how. Tell YOUR story. Join us to create change!

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Popularity: 5% [?]

Our Favorite Resources! Associations, Foundations, and More!

This is a list we put together with some of our favorite organizations. If you have one you would like added, leave a comment below and we will update the list soon.

(This collection of links is copyrighted. Please don’t copy and paste it to your web site.)

• Advocacy for Neuroacanthocytosis Patients http://www.naadvocacy.org/
• Advocacy for Patients with Chronic Illness, Inc http://www.advocacyforpatients.org/
• Agency for Healthcare Research and Quality www.ahrq.gov
• Alliance of State Pain Initiatives http://www.aspi.wisc.edu
• American Academy of Hospice and Palliative Medicine http://www.aahpm.org
• American Academy of Orthopaedic Surgeons http://www.aaos.org
• American Academy of Pain Management http://www.aapainmanage.org
• American Academy of Pain Medicine http://www.painmed.org
• American Arthritis Society http://www.americanarthritis.org
• American Autoimmune Related Diseases Association http://AARDA.org
• American Behcet’s Disease Association http://behcets.com
• American Cancer Society http://www.cancer.org/docroot/home/index.asp
• American Celiac Society http://www.williamshaffer.org/acs/about.htm
• American Chronic Pain Association http://www.theacpa.org
• American College of Physicians http://www.acofp.org
• American College of Rheumatology http://www.rheumatology.org
• American Diabetes Association http://www.diabetes.org
• American Fibromyalgia Syndrome Association http://www.afsafund.org
• American Geriatrics Society http://www.americangeriatricssociety.org
• American Headache Society http://americanheadachesociety.org
• American Lyme Disease Foundation http://www.aldf.com
• American Medical Association http://www.ama-assn.org
• American Osteopathic Association http://www.do-online.org
• American Pain Foundation http://www.painfoundation.org
• American Pain Society http://www.ampainsoc.org
• American Porphyria Foundation www.porphyriafoundation.com
• American Society of Anesthesiologists http://www.asahq.org
• American Society of Interventional Pain Physicians http://www.asipp.org
• American Society of Law, Medicine and Ethics http://www.aslme.org
• American Society of Physical Medicine and Rehabilitation http://www.aapmr.org
• American Society of Regional Pain Management http://www.asra.com
• Amputee Coalition of America http://www.amputee-coalition.org
• APS Foundation of America, Inc. http://www.apsfa.org
• Arthritis Foundation http://www.arthritis.org
• Association of Gastrointestinal Motility Disorders, Inc.http://www.agmd-gimotility.org/
• Association of Oncology Social Work http://www.aosw.org
• Autoimmune Information Network http://www.aininc.org
• BAMS http://www.bandagainstms.org
• Band Against MS-Clay Walker http://www.bandagainstms.org
• Band-Aids and Blackboards http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/
• Beyond Chronic Pain http://www.beyondchronicpain.com
• Board Certified.com directory of those board certified physicians who wish to present an elevated Internet presence to the patient community http://Board Certified.com
• Bridge Medical http://mederrors.com
• But You Don’t Look Sick http://butyoudontlooksick.com
• Caring Bridge http://caringbridge.org
• C-Cange (cancer focus) http://www.c-changetogether.org
• CFIDs Association of American http://www.cfids.org/
• Celiac Sprue Association http://csaceliacs.org
• Centers for Disease Control and Preventionhttp://www.cdc.gov
• Center for Medical Consumers www.medicalconsumers.org
• Crohn’s and Colitis Foundation www.ccfa.org
• Chron’s Adventure http://CrohnsAdventures.org
• ChronicBabe http://chronicababe.com
• Citizens for Patient Safety http://citizensforpatientsafety.org/
• Compassionate Friends – coping with death of child http://compassionatefriends.org
• Conquering Chiari http://www.conquerchiari.org
• ConsumerLab http://ConsumerLab.com
• Consumer Health Information Corporationwww.consumer-health.com
• Consumers Advancing Patient Safety (CAPS) www.patientsafety.org
• Empowered Patient Coalition http://empoweredpatientcoalition.org
• Diabetic Mommy http://www.diabeticmommy.com
• DiagKNOWsis http://www.diagknowsis.org/
• Digestive Disease National Coalition http://www.ddnc.org
• Disabled American Veterans http://www.dav.org
• Dysautonomia Foundation http://www.familialdysautonomia.org
• Dysautonomia Information Network http://www.dinet.org
• Dystonia Medical Research Foundation http://www.dystonia-foundation.org
  
• Ehler-Danlos National Foundation (connective tissue disorder) http://www.ednf.org
• Ehlers Danlos/Hypermobility Syndrome http://teens.hypermobility.org
• Every Patient’s Advocate – Trisha Torrey http://healthcarespeaker.org/
• Facial Pain Association http://fpa-support.org
• Fibromyalgia http://www.fmaware.org
• For Grace http://www.forgrace.org – Reflex Sympathetic Dystrophy
• Healing Well http://healingwell.com
• Health & Disability Advocates http://hdadvocates.org
• Health Grades http://www.healthgrades.com
• Hereditary Neuropathy with liability to Pressure Palsies http://www.hnpp.org
• Hospice Patients Alliancehttp://hospicepatients.org
• Hospice Foundation of America http://www.hospicefoundation.org
• IDEAS Kids – Intestinal Diseases http://ideaskids.com
• IDF: Immune Deficiency Foundation, www.primaryimmune.org
• IG Living Magazine – Immune Gobulin http://www.igliving.com
• Institute for Safe Medication Practices http://www.ismp.org/
• Intracranial Hypertension Research Foundation http://www.ihrfoundation.org
• Intercultural Cancer Council http://www.iccnetowork.org
• International Association for Hospice and Palliative Care http://www.hospicecare.com
• International Association for the Study of Pain http://www.iasp-pain.org
• International Foundation for Functional Gastrointestinal Disorders (IBS) http://www.aboutibs.org
• International Stills Disease Foundation http://stillsdisease.org
• InvisABLE Illness http://www.invisableillness.com/
• Invisible Disabilities Association http://ida.org
• Joni and Friends http://joniandfriends.org
• Lance Armstrong Foundation http://www.livestrong.org
• Life Without Limbs http://lifewithoutlimbs.org
• Lung Cancer Alliance http://www.lungcanceralliance.org
• Lung Transplant Foundation http://lungtransplantfoundation.org
• Lupus Foundation of America, Inc. http://www.lupus.org
• Magic Foundation www.magicfoundation.org
• Maryland Pain Initiative http://www.marylandpaininitiative.org
• Mayo Clinoic http://www.mayoclinic.com
• Mastocytosis Society http://www.tmsforacure.org/
• Medically Induced Trauma Support Services (MITSS) www.mitss.org
• Medicarehttp://www.medicare.gov/
• Medline Plus Health Informationhttp://medlineplus.gov/
• Medscape http://www.medscape.com/home
• Medwatch – the FDA Safety Information and Adverse Event Reporting Program http://www.fda.gov/medwatch/index.html
• Mental Health Ministries www.MentalHealthMinistries.net.
• Myasthenia Gravis Foundation of America http://www.myasthenia.org
• Mastocytosis Society www.tmsforacure.org
• National Alliance for Mental Illness http://nami.org
• National Coalition for Cancer Survivorship http://www.canceradvocacy.org
• National Comprehensive Cancer Network http://www.nccn.org
• National Family Caregivers Association http://www.nfcacares.org
• National Fibromyalgia Association http://www.fmaware.org
• National Headache Association http://www.headaches.org
• National Hospice and Palliative Care Organization http://www.nhpco.org
• National Institutes of Allergy and Infectious Diseases (NIAID) http://www3.niaid.nih.gov/topics/lymeDisease
• National Institute of Arthritis and Metabolic Diseases (NIAMD) http://www.niams.nih.gov
• National Institutes of Health (NIH)http://health.nih.gov/
• National Invisible Chronic Illness Awareness Week http://InvisibleIllnessWeek.com
• National Kidney Foundation http://www.kidney.org
• National Multiple Sclerosis Society http://www.nationalmssociety.org
• National Necrotizing Fasciitis Foundation http://www.nnff.org
• National Organization for Rare Disorders http://www.rarediseases.org
• National Ovarian Cancer Coalition http://www.ovarian.org
• National Pain Foundation http://www.nationalpainfoundation.org
• National Patient Advocate Foundation http://www.npaf.org
• National Prostate Cancer Coalition http://www.fightprostatecancer.org
• National Stroke Association http://www.stroke.org
• National Vulvodynia Association http://www.nva.org
• National Women’s Health Resource Center http://www.healthywomen.org
• Pain.com-for professionals and patients http://www.pain.com
• PainPathways.org http://www.painpathways.org
• Pain Relief Network http://painreliefnetwork.org
• PAINWeek http://www.painweek.org/
• Pancreatic Cancer Action Network http://www.pancan.org
• Partners Against Pain http://www.partnersagainstpain.com
• Patient Advocate Foundation http://www.patientadvocate.org
• Patients Like Me http://patientslikeme.com
• Pharmacy Checker http://PharmacyChecker.com
• Power of Pain Foundation http://www.powerofpain.org
• Power Over Your Pain http://www.poweroveryourpain.com
• Prevent Cancer Council http://www.preventcancer.org
• PSC Partners Seeking a Cure http://www.pscpartners.org/
• QuackWatch http://www.quackwatch.org
• Race Against Pain http://www.RaceAgainstPain.com
• Reflex Sympathetic Dystrophy Syndrome Association http://www.rsds.org
• Rest Ministries Chronic Illness Pain Support http://restministries.com
• Saracoma Foundation of America http://www.curesarcoma.org
• Sceptor Pain Foundation http://www.sceptor.org
• Scleroderma Foundation http://www.scleroderma.org/
• Sickel Cell Disease http://www.sicklecelldisease.org
• Spondylitis Association of America http://www.spondylitis.org/
• Susan G. Komen for the Cure http://www.komen.org
• Texas Pain Society http://texaspain.org
• The Leukemia & Lymphoma Society http://www.leukemia-lymphoma.org
• The National Foundation for the Treatment of Pain http://www.paincare.org
• The National Migraine Association http://www.migranes.org
• The National Pain Foundation http://www.nationalpainfoundation.org
• The Prostate Net http://www.prostate-online.org
• United Spinal Association http://www.unitedspinal.org/
• United States Bone and Joint Decade http://www.usbjd.org
• Voice 4 Patients information and resources for those who have been victimized by healthcare error http://www.voice4patients.com/
• WEGO Health Activists http://community.wegohealth.com/
• Wilson’s Disease Association http://www.wilsonsdisease.org/
• World Institute of Pain http://www.worldinstituteofpain.org

INTERNATIONAL________________

• Asociacion Argentina para el Estudio del Dolor http://www.aaedolor.org.ar
• Associazione Italiana per lo Studio del Dolore http://www.aisd.it
• Australian Pain Society http://www.apsoc.org.au/interest.html
• British Pain Society http://www.britishpainsociety.org/
• Canadian Pain Society http://www.canadianpaincoalition.ca
• Egyptian Pain Society http://www.egyptianpainsociety.org
• European Federation of IASP Chapters http://www.efic.org
• Turkish Society of Algology http://www.algoloji.org.tr

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