CNN Health features a chat based on interest from Invisible Illness Awareness Week, with founder Lisa Copen, hosting.
Thank you for all your help with Invisible Illness Awareness Week. I have some follow up emails set to come out in future days, but this one took priority about the opportunity over at CNN Health.
When we live with invisible illnesses we often say no one understands. They don’t understand the pain, the fatigue, the strength it takes to push through it all. They don’t get our fear of infections, the stress of the bills, none of it.
And we wish the media would do more to cover invisible illness than just show celebrities who seem to be “back to their old life” once they have taken certain medications.
Well, CNN Health is paying attention! Last week they featured your “Images of Hope” from Invisible Illness Awareness Week. I was even asked to write an article for CNN Health on how to talk to one with a chronic illness. And they received over 140 comments in just hours. They listened . . . to you!
This week, in response to the article and the commenters, CNN Health is hosting a chat over at their Facebook page, http://Facebook.com/CNNHealth . It will be this Friday, September 21, 2012 at 9 AM pacific, 12 Noon Eastern. And I will be co-hosting it along with Sarah from CNN staff.
They are giving their readers a forum to discuss what is on our minds. And personally,
I would love for TONS of us to show up.
Now, this is for just 1 hour. I know some of you will not be able to come. If you cannot make it, will you take just a minute to comment on this post, and thank the health editor over at CNN Health, Ashley Hayes, for the opportunity. She is the one making a difference.
Too often we criticize the media. They don’t tell our story, or when they do, we complain that they didn’t tell our story the right way. But they are giving you and I a chance to tell our story–and that is vital.
If they do not hear from us, from people like you and I who live with invisible illnesses, they will not know that there is a story to tell. So, show up if you can. Put it on your calendar–right now. And if you can’t come, comment below.
Every little bit matters–because you–and your story–matter.
Special thanks to Elizabeth Cohen, CNN Senior Medical Correspondent for tweeting out about the chat!
Join Lisa as she talk about how it can “feel” to go to a “virtual” conference. How Invisible Illness Awareness Week impacted others, what she hopes you will take away from this week and more. She is interviewed by her husband, Joel.
Wondering what the “headquarters” for Invisible Illness Awareness Week looks like? Lisa takes you on a 3-minute tour of her home office.
Lisa was diagnosed with rheumatoid arthritis at the age of 24, in the midst of a typical life, finishing college and discovering where her passions resided. In less than a few weeks she went from significant pain in her feet to her entire body flaring. After changing doctors, searching for answers, she was diagnosed short thereafter. She has never been in remission and her rheumatologist has said that 80% of her pain is due to deformity.
She began Rest Ministries in 1996 after searching for a place where she could share her faith. Through this she has found her true purpose in having the opportunity to speak and write, encouraging others through whatever she pursues. She has written various books including Bible studies, and How to Start a Chronic Illness Small Group Ministry.
Lisa considers every day precious. She is a survivor of the flesh eating bacteria in 2008 and had four joints replaced in her left hand in 2009. Despite her daily pain and fatigue, her 9-year-old son keeps her going. She lives in San Diego with her husband and son and deals with insomnia by working at 3 AM.
Marriage can be difficult. Add into that the tension of a spouse living with a chronic illness and it’s a perfect storm for stress building. But you can find skills to help communication in marriage. What are some ways you can more effectively communicate with your spouse? How can you make sure each person feels as though they can share? How can you find a balance between what you share with your spouse that is helpful, versus what is overwhelming? How do men and women communicate differently? Pam addresses all of these and more and will leave you nodding in agreement, “Yep! That’s us!”
About Pam Farrel
Pam Farrel is a challenger, cheerleader and coach. With her husband Bill, the Farrels are international speakers, and authors of over 35 books including best-selling Men Are Like Waffles–Women Are Like Spaghetti: Understanding and Delighting in Your Differences
They are relationship specialist and seek to help people become “Love-Wise” Pam has a heart for women, first as a mentor and youth pastor’s wife, then serving for 15+ years as Director of Women’s Ministry alongside her husband, Bill, a senior pastor. Now the Farrels speak full time for women, men, couples, singles, and families and are frequents guests on radio and TV.
Pam is also a sought after women’s speaker encouraging women from her books: Woman of Influence, Woman of Confidence, 10 Best Decisions a Woman Can Make, and Devotions for Women on the Go! Her newest are 52 Ways to Wow Your Husband, Raising a Modern Day Princess, 10 Secrets to Living Smart, Savvy and Strong, LOL with God, and Becoming a Brave New Woman.
Pam has experience as a radio show host, Director of Women, pastor’s wife, and mentor. She is also the founder and President of Seasoned Sisters, a ministry to women 40-65. (www.seasonedsisters.com)
A few of their books include: Single Men are like Waffles, Single Women are like Spaghetti, The Marriage Code, Red Hot Monogamy, Why Men and Women Act the Way They Do, Love, Honor and Forgive, and 10 Best Decisions a Parent Can Make, 10 Best Decisions a Single Can Make, and 10 Best Decisions a Couple Can Make (Harvest House).
Pam is a mentor to numerous authors and speakers, nurturing leaders through her Circle of Influence program. Pam is a busy conference speaker for women’s events including speaking for over 12,000 moms at Hearts at Home, and more intimate groups, like pastor’s wives or leadership events, business seminars, military wives, church women’s retreats and conference center venues.
Both Bill and Pam travel globally to encourage audiences, together as well as solo, most recently to Singapore, Canada, Korea, Mexico, and Germany. They have been happily married for 32 years and are parents to three children, and two sons are married so their family now includes two daughters-in-laws and two small granddaughters and a new grandson. The Farrels live in San Diego, CA.
Some of Pam’s books: Woman of Influence: Ten Traits of Those Who Want to Make a Difference, Woman of Confidence: Step into God’s Adventure for Your Life, 10 Best Decisions a Woman Can Make, and Devotions for Women on the Go! Her newest are 52 Ways to Wow Your Husband: How to Put a Smile on His Face, Raising a Modern-Day Princess, 10 Secrets to Living Smart, Savvy, and Strong, LOL with God: Devotional Messages of Hope & Humor for Women, Becoming a Brave New Woman: Step into God’s Adventure for You.
Do you ever grow weary of how the media portrays your illness (if they even do)? Does it ever feel like they are sugar-coating the disease and the reality of it? How about when the doctor describes your illness as being more of an inconvenience than a life-changer? What can you do in these situations? How do you keep a sense of humor? When do you let it go, versus stand up for what you believe? Kelly will describe some of the ways she copes with illness and the misportrayal of her illness, among others.
About Kelly Young
Kelly Young is a patient advocate providing ways for people to be better informed and have a greater voice in their healthcare. She received the 2011 WebMD Health Hero award for her work with Rheumatoid Arthritis (RA) patients. Through her writing, speaking, and use of social media, Kelly stays busy helping others to become more aware of Rheumatoid Disease; advocating to the medical community for patients’ needs; creating opportunities for patients to connect and empower themselves.
In 2009, Kelly created RA Warrior.com, a comprehensive website about RA of about 700 pages and the hub a large, vibrant patient community. She also writes periodically for professional newsletters and websites including Healthcare Professionals Live and The Rheumatologist. Kelly serves on the Mayo Clinic Center for Social Media Advisory Board. Kelly has consulted for industry professionals and CME projects.
Thousands have enjoyed her YouTube channel’s realistic Public Service Announcements which that RA is not just “arthritis.” There are about 16,500 friends on her informative and friendly Facebook Fan Page. She moderates a weekly Twitter-chat on rheumatology topics, which can be followed with the hashtag she created: #rheum.
Kelly is the founding president of the Rheumatoid Patient Foundation (RPF) the first non-profit which exists solely to improve the lives of Rheumatoid patients. Through the RPF, she has initiated projects and built relationships which will expand understanding of RA and improve care for patients. It is her passion to see that there will not be another generation of Rheumatoid patients who suffer the same way past ones have.
Kelly is a mother of five who has homeschooled for 18 years. She has lived with unrelenting Rheumatoid Disease for six and a half years. She shares love and hope with others, grateful for God’s help to use her illness for good.
At RAWarrior you will find 700 free articles w/ the best information on RA online, served up in a hopeful and encouraging voice and a free monthly newsletter.
If you or someone you love is a teenager with illness, you will find Naomi is a wonderful encourager to you. But even if you are not a teenager, you will find this young woman wise beyond her years and a real inspiration when it comes to living with an invisible illness. She discusses the journey of being a tween with an illness to teenager, and then through college and career. Hear her tips for those with illness for going to college and career aspirations.
Naomi Kingery, also known as The Diabetic Diva®, was diagnosed with type 1 diabetes a decade ago. Kingery made a decision to begin to help others embrace their chronic illness as she learned to do the same while growing up with diabetes.
Through the years her work in the diabetes community has included being the author of The Sugar Free Series, a blogger, and a Diabetes Advocate. She also currently working as an employee for Medtronic and is attending college for a degree in Kinesiology.
Naomi’s books are all from “The Sugar Free Series” (1 paper back called SUGAR FREE ME and 2 eBooks called Sugar Free Teens: The Diabetic Diva’s 5 Tips on Reaching Your Potential and Sugar Free Support: The Balance of Supporting Your Diabetic Through Every High and Low. She is working on the last book in the series.
Books are available online through Amazon and Barnes and Noble but direct purchase links are available on her website.
On her web site, Live to Love Diabetes you will find a weekly blog where she documents what it is like to live with diabetes; her yoga Cd-Rom and DVD; A list of media resources that have shared Naomi’s story, including previous radio interviews for Invisible Illness Week.
As we wind down the week we have some great speakers for you. Naomi Kingery will be sharing her journey with diabetes from a “tween,” through teens, college and career. Pam Farrel shares about communication in a marriage and how it really are the little things that can matter the most. And then Kelly Young (@rawarrior as many of you know her) shares about the frustrations we sometimes feel when the media or doctors and such sugar-coat our illness. (“Why can’t you go run a marathon now that you are taking that medication–like the girl on the commercial?)
At 5 PM pacific I have prepared a 30-minute video for you as our closing seminar as I share about the week, what I hope you have taken away from it and more. I even have a little video giving you a tour of my office so you can see the “home-base” of Invisible Illness Awareness Week. And guess who interviews me? My husband!
A few things worth noting:
First, just a reminder that all of the videos will stay here--so come listen to them anytime. Or if you listened to one this week, and you are now trying to put things into place that the speaker suggested, remember it’s still here to come back and listen to again if you need refreshed.
Secondly, yes, we will have all the audio files available on a flash drive. We will have this available to order in our store soon (they should arrive early October.)
And lastly, this has all been a work of my heart. I am exhausted (smile) and can barely type today I am so sore, but it was worth it. If you are in the position to give any financial gift, please know it will help us cover the costs of this event. We have not received any donations or any funds whatsoever to pay for this. I have done as much of the work as I can such as the website, social media, and all of the videos. And I am a full-time volunteer. So, if you are able, know how much it means to me.
I hope you will join us today. Our Friday speakers have waited anxiously to have their seminars broadcast, so make sure to drop by at some point today.
Have you ever wanted to be more of an advocate for your disease, or even just all people who live with a chronic condition or disability? Does the idea of being an advocate appeal to you, but it seems overwhelming? Where do you start? Jennifer explains how she had become an advocate in her college, workplace and community–all while fighting various illnesses and fatigue–and how you can too.
About Jennifer Pettit
Jenny Pettit is an auditor by day and health activist by. . .well. . . day, night, and any other time she can fit it in. First diagnosed with invisible chronic illnesses over a decade ago, Jenny has spent the years since reshaping the world around her. With experience developing programs for everyone from college students to corporate leadership, she’s happy to share what she’s learning.
The typical person being diagnosed with the autoimmune disease Sjogren’s Syndrome is a woman in her 40s. Jenny was diagnosed as a high school sophomore at 15. She believes being diagnosed with a progressive chronic illness so young coupled with the lack of familiarity her community had with Invisible Illnesses is what propelled her into activism. Her additional diagnoses, including Fibromyalgia, Dysautonomia, and more, only add to her conviction that people with Invisible Illnesses have many experiences and needs in common.
Jenny wants to leverage these common experiences to achieve three goals: raise awareness, connect patients with each other, and help them find the resources they need. Modern e-patients put a lot of effort into self-education and research, but each person is creating their own wheel. Imagine how much more we could accomplish – and how much faster we could do it – if we used each other’s wheels as a framework upon which we could build.
Through her grassroots organization UII – Understanding Invisible Illnesses, Jenny works with the different communities in our lives to achieve these goals. From local parishes to colleges to national (and international) companies, UII and Jenny are using social media as well as live programs to change the way our communities perceive and respond to people with disabilities. Her work has earned her several recognitions including KPMG LLP’s new Chairman’s Award for High Performance.
Do you ever feel like the crises in your life just keep stacking up? Sometimes it becomes a real challenge to remain optimistic when our friends are going on vacations and we are just trying to get through our newest battle with our disease–plus the rest of life! It can all feel like it’s falling apart –financial battles, painful relationships, raising children or grandchildren. The stress adds up. Maureen will help us to understand how to face crises with confidence and how to avoid spreading ourselves too thin in serving others, while trying to take care of ourselves.
About Maureen Pratt
Maureen Pratt has lived with serious, chronic illness and pain for most of her life. Before she was 18 years old, she’d had pneumonia 13 times, and since then developed multi-organ involved lupus, cardiovascular disease, scoliosis, autoimmune thyroid disease, iron deficient anemia, Sjogren’s disease, Raynaud’s phenomenon, fibromyalgia, osteoarthritis, thrombocytopenia (low platelets), and Plummer-Vinson Syndrome, among other illnesses. She’s also bald, as a result of alopecia totalis!
Despite her health challenges, Maureen dreamed of being a writer.
When she was diagnosed with lupus, God put her on a path that has led to her writing books, articles, and giving seminars like this one, always with the intent of inspiring and educating others on ways to live as fully as possible no matter what hardships, illnesses, pain or challange might occur. Maureen’s books include, “Beyond Pain: Job, Jesus, and Joys,” and the bestselling, “Peace in the Storm: Meditations on Chronic Pain & Illness.”
Maureen’s Books: Beyond Pain: Job, Jesus, and Joy and the bestselling, Peace in the Storm: Meditations on Chronic Pain and Illness.
Recovery. A simple word that can mean all kinds of pain, fatigue, and you never know for how long. Trish shares her story about recovering from open heart surgery last year–along with her illness, multiple sclerosis. She discusses some things she did to help her recovery along, the emotions involved, including depression, and how she used the time to grow, despite the weariness of it.
About Trish Robichaud
Trish is a multiple award winning Disability Awareness Coach, Maximum Life and Business Coach, Author, Advocate and Motivational Speaker who lives with multiple sclerosis, major depression & heart disease. She is a woman with a disability but she is NOT a disabled woman.
Trish teaches women living with chronic illness or disability how to honour and accommodate their health while striving for optimal health, work/life balance and even entrepreneurial success.
Her clients build the confidence necessary to establish effective communication, set comfortable boundaries and nurture trust in their loving relationships. And entrepreneurs learn how to set up and manage systems that leverage technology to incorporate automation into all of their business processes. From client intake to social networking, from scheduling appointments to collecting and capitalizing on client testimonials.
Trish coaches her clients on how to work smarter, not harder and enjoy more free time doing what they enjoy most! To learn more, go to and signup for a complimentary Optimal Health or Business Automation Strategy Session.
When you think of destructive relationships, what comes to mind? Is it different than abusive relationships? Most people think of some kind of physical, verbal, or sexual abuse. However, there are many other harmful relational patterns that are not necessarily recognized as “abusive.” This session will help you see more clearly what’s wrong in relationships that hurt you and help you decide if you have the power to change them. For example, if your spouse complains all the time about how you are “lazy” instead of understanding your illness, where do you go from here?
You’ll learn to identify the underlying heart issues at work in these relationships and Be empowered to respond to problems in a biblical, life-giving way. You will learn to say “No “ without feeling guilty. Take a positive step toward building healthy relationships in your life and avoid those abusive relationships.
About Leslie Vernick
Leslie Vernick is a popular speaker, author, licensed clinical social worker and life coach with a private counseling practice in Pennsylvania. She has over 25 years of experience helping individuals, couples and families heal, rebuild or grow their relationships. Whether counseling, speaking or writing, Leslie gently leads people to make real changes in their lives. She loves helping people learn to:
- Confidently speak thoughts and feelings in a constructive way.
- Encounter God’s peace and presence in the midst of suffering or difficult loss.
- Develop the discipline to turn dreams and desires into reality
Leslie is the author of six books, including the best selling, The Emotionally Destructive Relationship and her most recent Lord, I Just Want to be Happy.
Leslie currently serves on the Board of Directors for Lighthouse Network, a Christian mental health outreach ministry and Beneath His Wings, A Christian outreach for women needing shelter from abusive relationships. She has had the unique privilege to teach in Iraq, Russia, Romania, Hungary, and the Philippines. She is also featured in three of the American Association of Christian Counselor video teaching series including ExtraOrdinary Women and Marriage Works.
Leslie and her husband, Howard, have been married for over 34 years and they have two adult children and she loves being a new grandmother.
Some of Leslie’s books: The Emotionally Destructive Relationship: Seeing It, Stopping It, Surviving It, How to Act Right When Your Spouse Acts Wrong, and her most recent Lord, I Just Want to Be Happy.