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 know about the event and how it can specifically encourage you.Hi, Lisa. Thanks for connecting with us here today at Getting Closer To Myself.
LC: Thanks so much for having me. Its wonderful to get to visit so many amazing blogs on a variety of health and illness issues. All of you who blog make such a difference in increasing awareness --not just about illnesses, but the people behind them who live with the condition and pain each day.
Thanks. Speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week. That's quite a description.
LC: Yes. Often I refer to it as just Invisible Illness 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 affects 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.
We hope that this week is an additional opportunity for people to use it as a catalyst to be able to discuss or blog about what it is like to live with their particular disease. They can share how they may look healthy most of the time, but are still dealing with chronic pain or uncomfortable and annoying side effects.
Explain to me what a virtual conference is.
LC: A wonderful opportunity to "attend a conference" without every having to get dressed! The main part of the Invisible Illness Week is our 5-day virtual conference--which is completely free--September 14-18. There are 20 speakers who are experts in their area and with chronic illness they will be giving a 40-minute presentation and then taking live calls. The seminars are
M-F, 4 times a day on a variety of topics: going to college, marriage, applying for disability assistance, cleaning, finding the right job, faith, preparing for surgery and many more. All are free, listened to live or later, and even downloaded from itunes to your ipod or purchased on a CD.
That sounds amazing. So, do you have last year's seminars available?
LC: They are. Before last year we used a chat room and had written transcripts, but 2008's can be listened to free from your computer, downloaded from itunes, or purchased on a CD.
I know many of us would love to opportunity to go to a 5-day conference but ironically, because of our illness, things like traveling, finances, sitting that long, etc. it's just not possible, so this is an ideal solution.
LC: Isn't it? It's kind of ironic that we began virtual conferences years ago, but now many organizations and companies are making this a trend because of the economy and costs of a real conference.
How did you get involved in the chronic illness blogging world?
LC: I had started the restministries.org web site in 1997 and so when blogging first started, I was actually too busy with the ministry work and writing for my web site to jump on the blogging bandwagon. After seeing it wasn’t going anywhere and learning how one can reach more people because of the feeds of blogs, etc., I finally started blogging maybe five years ago. It’s just in the last couple of years I have moved most of the content that used to be in the weekly HopeNotes newsletter over to the blog. I enjoy coming up with new topics and angles and having the opportunity to read all the comments from people. It’s more interactive than newsletters. My blog is chronicillnesssupport.com.
Tell us why you started Invisible Illness Week? What made you see this as necessary?
LC: Well, a few reasons. I began Rest Ministries in 1997. It's a Christian organization that serves those who live with chronic illness and the sponsor of Invisible Illness Week. I kept seeing many people who felt very alone, misunderstood, and frustrated, feeling that their illness, pain, and suffering were completely invalidated. Some people have a spouse who even doubts the existence of an illness.
I also saw lots of family members, caregivers, doctors, churches, etc. who wanted to reach out to people with illness, but they said all the wrong things. Eventually they distanced themselves from their loved ones because they just didn't understand illness or how to respond to it.
The fact that illness and pain is invisible to see can make it hard for healthy people to understand. And those with illness can easily become bitter when their loved ones believe it is being exaggerated. It makes for a sad situation all the way around and I thought communication could be a helpful first step.
People I know have explained this kind of thing to me before. It does sound familiar (i.e. my life).
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.
So you decided to start Invisible Illness Week and address some of these issues?
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 doesn't make a difference what illness we have, where we live, how old we are, how long ago we were diagnosed, etc. The invisibility factor of our condition often gives us more in common than any other factor of our illness. We all have much more in common than we realize.
What illness do you live with, Lisa?
LC: I was diagnosed with rheumatoid arthritis in 1993, at the age of 24. A few years after that, fibromyalgia. I've never been in remission, so I have had a difficult time of it, though I know it could have been worse. Each day is a challenge and I am on multiple medications to just try to have some quality of life and keep walking. My hands and feet are pretty deformed now and I have many surgeries in my near future. My illness has gone from being completely invisible to much more visible and it's not just the pain that bothers me now, but the loss of being able to do things, or do them with ease. Driving or unloading the dishwasher is an event because of my hands. Suddenly stepping off a curb is a challenge.
I heard that you type with just a few fingers.
LC: Yes, it's true. I use just three fingers and my two thumbs to type. One adapts. I think I still can type about 50 words a minute, but sometimes my fingers start to go numb. I have a voice program I can use, but I am a fast talker and tend to get impatient with its limitations.
How can people find out more information on how to get involved with Invisible Illness Week?
LC: Thanks for asking, because just by helping us spread the word, for example, reading and sharing about this blog post, is the perfect start to be a part of our grassroots cause. I don't have to tell you that we don't have a marketing budget! I hope people know that they are making a difference just by introducing other people to our virtual conference. And not just those who
are ill, but spouses, parents, and caregivers. Everyone knows someone who is ill. You can find everything about the week at our web site National Invisible Chronic Illness Awareness Week, and we also have some fun items like buttons, tote bags, bumper stickers, silicone bracelets that say, "Invisible Illness, Visible Hope" and awareness pins.
Our theme this year is "A Little Help Gives a Lot of Hope.
We also are taking submissions for bloggers who would like to be a guest blogger on our invisible illness week web site. It can even be a blog post you have previously posted on your blog. You can also sign up to commit to blogging about invisible illness or Invisible Illness Week on your own blog through a service we are using called Bloggers Unite. We have a Facebook Cause page. You can share the 2009 video, the Twitter "Facts" we are sending out, and items like that. Be sure to remember to inform your counselor, doctors, pastor, peers, colleagues and others about Invisible Illness Week; we have brochures for just a few dollars.
Some people call their local newspaper and share about the week, their support group, or their illness experience. Since it's listed in Chase's Annual Events, journalists can tie in the personal story with the annual event.
Has social media made a difference in how you have been able to spread the word about Invisible Illness Week?
LC: Yes! So much, it's unbelievable. It's given every person who is interested in letting people know about what is important to them (like increased awareness about an illness) a forum. We've sent out some series of tweets in the forms of lists like 20 things to say to a chronically ill person, illness facts, 20 things not to say, etc. with the twitter hashtag #iiwk09. There have been some really deep conversations at places like Facebook, spurred on from our posts. 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.
How do you feel can chronically ill bloggers impact the chronic illness community?
LC: In my opinion, the blogging community has had one of the greatest emotional impacts for people who have a chronic illness. I tend to be a part of the patient and general “illness” blogging community, so when I recently started reading more blogs on my own disease, rheumatoid arthritis, I was amazed at just how much content there was; how many people are under 50 that I can so relate to; specific blogs about experiences I have had or treatment and surgeries I am having or considering.
There are some excellent professional style web sites and books out there for people with practically any illness, but when I am tired and mentally fatigued, I just want something simple from someone who has “been there, done that” – not the professional details with words I cannot pronounce. It’s the blogging community I turn to. And as more and more media realize this, the blogging community will only continue to grow.
I know there are a lot of people who feel so utterly alone, as if no one understands what they are going through. What do you tell these people?
LC: Honestly, if I could just sit beside them and give them a long gentle hug, I would do that first. I struggle with just listening myself; I always want to start solving the problem! But I know someone to listen to them is what most people really need.
Secondly, I would want to validate that the feelings that they are experiencing that no one understands--well, it's true. 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 they may 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.
You have written a book that gives 505 ideas on how people can reach out to someone who is ill, right?
LC: Yes, its called "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." It's a helpful book that I refer to for ideas, even though I wrote it, because when someone I care about is hurting, it is hard to think beyond bringing them food. We also have cute little JOY cards that stand for "Just Offering You..." that look like a gift certificate. A person can fill it out with what he or she is able to do like running an errand or doing laundry.
That's a terrific idea! I would imagine that it would be easier to accept help from someone if it looked like 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."
Well, Lisa, thank you again for joining us here today. And also for starting National Invisible Chronic Illness Awareness Week. I understand that in addition to your health challenges, you are also a wife and mom. I know it can't be easy to try to do all that you do.
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. It's going to be a great time!
