My Interview with Lisa Copen, founder of National Invisible Chronic Illness Awareness Week

Lisa Copen joins us today as the founder of National Invisible Chronic Illness Awareness Week. This year it is September 14-20, 2009 and there are lots of ways to get involved, including a free 5-day virtual conference. Lisa is on a blog tour to help people get to know about the event and how it can specifically encourage you.


Hi, Lisa. Thanks for connecting with us here tonight at The ICIE blog.


LC: Thank you for the honor of being here. I read a lot of blogs, but recently I've visited more than ever before and I'm amazed at how the quality and quantity of blogs on health and illness matters have grown over the last couple of years. Both the readers and writers of blogs have changed how people perceive different illnesses, because they reveal not just the symptoms of illness, but the daily lives of the people who live with them.


Yes. Speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week.


LC: Often I refer to it as just Invisible Illness Week or II Week or NICIAW. Our mission is to have a designated time, worldwide, in which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, churches, health care professionals and government officials about the effects of living with a disease that is not visually apparent. Through programs and resources, we seek to recognize the daily challenges of more than 100 million adults and children who live with invisible illness.

Its also a great chance for people with any illness to be involved in a national event to increase the understanding of their own particular disease. They can use our event to blog about the emotions of living with their illness, for example, how they often may look perfectly fine but are in deep pain.


Explain to my readers what a virtual conference is. I know about it because I listened to it last year on Blog Talk Radio, and the year before that I was a presenter; my topic was "Blogging About Your Illness."

LC: The virtual conference is a unique opportunity to "attend a conference" without having to get out of your pajamas! The main event of National Invisible Chronic Illness Awareness Week is this 5-day virtual conference--which is all completely free--September 14-18. We have 20 speakers who are experts in chronic illness and their specific area and each will be giving a 40-minute seminar and then taking calls from our listeners live. The seminars are M-F, 4 times a day, and will feature a variety of topics such as going to college, the challenges of marriage, applying for disability financial assistance, cleaning and organizing, finding the right job, faith, preparing for surgery, parenting, and many more. Here is the current schedule. You can listen to them all free live, or later on your computer, even download them from iTunes. Or they can be purchased on a CD.


Really? So are last years programs available too?


LC: They are. Before last year we used a chat room and had written transcripts, but 2008's conference can also be listened to free from your computer, downloaded from iTunes, or purchased on a CD.


I know a lot of us would love to attend a 5-day conference on how to better cope with chronic illness, but because of our illness, traveling, finances, sitting for so long, and other factors, it just isn't possible, so this is perfect.


LC: Isn't it? There's a certain amount of irony that we began doing the virtual conferences years ago, but now a lot of companies and organizations are choosing this option instead of an actual conference because of the economy.


Tell us why you started Invisible Illness Week? What made you see this as necessary?


LC: For a few reasons. I began Rest Ministries, a Christian organization for people who live with any kind of chronic illness or pain, in 1997 because I saw the need to connect with others who are going through a similar journey in their life. Rest Ministries is also the original sponsor of Invisible Illness Week, although II Week itself is a secular event (not specifically relating to religion or to a particular religious body). Some of the presenters' seminars do focus on spirituality in general and Christianity specifically, but so far more than half of the presentations are completely secular.

Anyway, I witnessed a lot of people who were very bitter and frustrated because they felt so alone and invalidated in their pain. Some people even had spouses who questioned whether the illness existed at all. But I also heard from family members, caregivers, doctors, churches, etc. who really did want to know how to communicate better with those who had a chronic illness. They tried to say the right things, but it was usually the wrong thing, and so they ended up just withdrawing from the relationships.

When illness and pain are invisible it can make it extremely hard for healthy people to grasp the significance of how much it changes one's life. It's easy for one with illness to become bitter when the people they love the most may not even believe the illness exists or that it's being embellished. It's all very sad, and I felt more communication was necessary.


It all sounds very familiar to me.


LC: It does sound familiar, doesn't it? Even those of us who would say we cope pretty well with a chronic illness still have moments when our frustrations can get the best of us. It can be as simple as legally parking our car in a handicapped parking spot and someone walking by gives us "the look" of skepticism. Or maybe one of our dearest friends innocently asks, "So, you must be feeling all better now, right?" There is a big difference between being sick and having a chronic illness and most people don't grasp that difference.


This is what motivated you to begin an invisible illness week? To increase the communication about all of these issues and emotions involved in living with an illness or pain that no one can see?

LC: Yes, I saw such amazing people who survive against all odds and still had hope and faith. I wanted to give them an opportunity to encourage others who were going through depression or hopelessness.

It really doesn't matter what illness we have, where we live, what age we are, how long ago we were diagnosed, etc. The fact that most of our illnesses are invisible and not seen by people gives us a lot more in common that most of the physical symptoms of our specific illnesses ever could.


What illness do you have, Lisa?


LC: Rheumatoid arthritis is the main disease I struggle with. I was diagnosed in 1993 at the age of 24. A few years after my diagnosis I started having symptoms of fibromyalgia and was later diagnosed with that. Unfortunately, I've never experienced any kind of remission that all the doctors hoped for, so the last sixteen years have been a real challenge. I know I could be worse off now and that in some ways I've been very blessed, but I'm also going through the emotions of my illness becoming more visible. My illness isn't just painful every day now, but it's hard to do dishes or drive because my hands and feet are becoming more and more deformed. I take a lot of medications that have slowed the disease progression down, but I've been in a new season this last year and have many surgeries in the near future.


What you do is admirable, but the fact that you do it all with so very many challenges is just incredible.

I heard that you type with just a few fingers.


LC: Yes. I use about 3 fingers and my 2 thumbs. I have a voice program but I usually want to talk too fast and it can't keep up.



That's pretty amazing about the typing thing.

So, how can people get involved with Invisible Illness Week and find out more information?


LC: I'm so glad you asked because just by getting involved in helping us spread the word, like by reading and sharing about this blog, is one way to be part of our grassroots effort. I hope it's rewarding for people to know that they are making a difference just by introducing others to the virtual conference. Everything can be found at our web site National Invisible Chronic Illness Awareness Week, including some fun items like buttons, bumper stickers, tote bags, pins, t-shirts and silicone bracelets that say, "Invisible Illness, Visible Hope."

This year's theme is "A Little Help Gives a Lot of Hope."

We are also accepting blog posts from people to be featured on our site as guest bloggers. And we have a place to sign up to commit to blog on the topic of invisible illness on one's own blog. You can join our cause on Facebook and share it with others, tell people about our video, share our twitter facts about illness, things like that. Tell your doctor, counselor, pastor (priest, rabbi, monk, imam etc.), colleagues; we have brochures available too.

Some people call their local newspaper and share about the week, their support group, or their illness experience. Since II Week is listed in Chase's Annual Events journalists can tie in the personal story with the annual event.



Could you explain more about how one would go about getting their local newspaper to do a story on II Week and tie it in with their personal story?



LC: If you know anyone that works for the local newspaper, that is a great place to start, but most of us don’t. I would read the newspaper and see what reporters or columnists write about and if you see one that seems like they would be open to a story on chronic illness, call and ask to speak to them specifically. If not, you could call the paper and talk to the receptionist and explain that National Invisible Chronic Illness Awareness Week is in September, and you wanted to bring it to the attention of your community that nearly 1 in 2 people live with a chronic condition. We have tips and statistics on our web site www.invisibleillness.com under “media.”

If you attend a support group, you may want to mention that they would be available to comment, or if you have a HopeKeepers group, a lot of media is interested in the Christians reaching out to those with illness “angle.”

Your personal story should have something beyond just your illness and diagnosis journey. Do you volunteer locally? Own a business? Have a service animal? Lead a support group? Even if you are involved with Rest Ministries online, media may be interested in the aspect of how many people connect with others online each day to give support for their illness. Our “virtual conference” fits into that too, as a human interest story as well as a “technology” story.


Has social media made a difference in how you have been able to spread the word about Invisible Illness Week?


LC: Absolutely. Exponentially! For example we've done a series of tweets on 20 things not to say to a chronically ill person and 20 things to say. Our twitter hashtag is #iiwk09 to find Invisible Illness Week tweets easily. A lot of interesting conversations have been spurred by these tweets. Be sure to follow us @invisibleillwk on Twitter!


Over 1600 people have joined our cause on Facebook. We're giving away prizes to people who blog and tweet on the topic.


We both know that there are thousands of people with illness who feel desperately alone and think no one possibly understands what they are going through. What would you tell these people?


LC: Truthfully, if I could I would just sit beside them and give them a gentle hug. I struggle with the ability to sit and not say anything, as I typically want to start problem-solving immediately. But I know most people feel that no one is ever willing to truly listen to what they are going through and all of the emotions involved with it. They don't have anyone to talk to or be vulnerable with.

Secondly I would want to validate the feelings that they are experiencing, that no one understands. Unfortunately, their experience is unique and no one can truly know what it's like to be in their shoes. Illness can be an extremely lonely event. That said, though the illness may be a lifetime event, the isolation doesn't need to be. There are a lot of ways to build relationships with people who do understand more than one might expect, they just have yet to be discovered. If you are unable to drive to a support group, there are many online groups where you will find comfort. The social network I began is at Rest Ministries Sunroom and I recently started Illness Twitters in order to connect people who twitter about illness or health issues.

Those are excellent groups, and I'll just mention here that a good way to find an online support group is to google "{your condition} support groups online." For example: fibromyalgia support groups online.


LC: And lastly, since my faith is in the Lord, I would want those with illness who feel desperately alone and think no one possibly understands what they are going through to know that regardless of what negative experiences they've had with churches or Christians, they may want to give God a try. He can give comfort that we just cannot get from any person. And they can still have God's "Plan A" for their life. The illness hasn't messed it up and bumped it down to "Plan B." I know that sounds cliche, but I hear stories of this every day and have found it to be true myself.



Would you give us some suggestions on getting our church to put a blurb about NICIAW in the monthly newsletter or the weekly bulletin?



LC: Well, since nearly 1 in 2 people live with illness, ask around about who is in charge of the bulletin or newsletter, or ask about finding someone who has influence on what goes in it. What has this person's family dealt with? Have they had someone who has been a caregiver for a disabled child, spouse or aging parent? Or, does someone on the pastoral staff have an illness? Those who have some kind of direct or indirect experience with ICI are the ones who will be most likely to understand the benefit of support for those with invisible illness and their loved ones.


You have a book out that gives people ideas about how to help a chronically ill friend, don't you?


LC: I do. It's called "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." It's actually a very helpful book. Even though I wrote it, I still refer to it frequently for fresh ideas on how to encourage someone who is hurting. Too often I get stuck in the rut of not being able to think of anything other than another meal. Food is a nice gesture, but there are so many more creative and memorable ways to show someone you care.

We also have cute little JOY gift certificate cards available on the websites that you can give a friend when you are offering to do something for them. JOY stand for "Just Offering You" and one can fill out what they are able to offer (like errands, laundry, taking your child for a play date, etc.) and when the best time is for them to volunteer to help.


What a great idea. It seems like it would be easier to accept help if it was in the form of a gift certificate.


LC: Yes, that is the idea. Groups like a support group or a women's ministry will find these perfect, but they are also nice for anyone who wants to help a friend and say, "Here is what I can do to help and a good time for me to do it."


Thank you again for joining us today, Lisa. Thank you for organizing Invisible Illness Week. I know with your own health issues, and since you are also a wife and mom it can't be easy.


LC: You are right, it isn't, but it's more than worth it! The people I meet or email each day keep me going, and I have a husband who is incredibly supportive. Thank you for hosting me here at your blog today. I hope your readers will head on over to National Invisible Chronic Illness Awareness Week and let their friends know about the free 5-day virtual conference. Its going to be a great time!


Yes, if last year's event is any indicator, it will be exciting and stimulating and inspiring and a great networking opportunity and... I could go on and on. Maybe you should try it out yourself!



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