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Invisible Illness Awareness Week Founder Shares Why She is Passionate AboutInvisible Illness
by Lisa Copen
Today we are joined by Lisa Copen, founder of National InvisibleChronic Illness Awareness Week which is being held this year September 14-20, 2009.Lisa is on a blog tour to help increase awareness about the week and let people know howget involved. One of the highlights is their free 5-day virtual conference.Hi, Lisa. Tell us about National Invisible Chronic Illness Awareness Week. That's quite amouthful!LC: I know. You'll often hear it described as just Invisible Illness Week too. Our missionis 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 livingwith a disease that is not visually apparent. Through programs and resources, we seek torecognize the daily challenges of more than 100 million adults and children who live withinvisible illness.We hope that this week is an additional opportunity for people to use it as catalyst to beable to discuss or blog about what it is like to live with their particular disease. They canshare how they may look healthy most of the time, but are still dealing with chronic painor uncomfortable and annoying side effects. Now tell me what exactly is a virtual conference?LC: The highlight of the week is our 5-day free virtual conference September 14-18. Wehave 20 guest speakers who will be giving a 40 minute presentation and then taking callslive. The workshops are 4 times a day, all 5 days and we have a variety of topics: going back to school, applying for disability assistance, cleaning and organizing when you arechronically ill, going back to college, parenting, how faith makes a difference, decreasinganxiety before surgery and the list goes on. All are free and can be listened to live or later,even downloaded from itunes to your ipod or purchased later on CD.That sounds amazing. So, do you have last year's seminars available?LC: They are. We used a chat room originally so we had written transcripts, but one canhear 2008's programs can be heard from a computer, itunes, or even 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 manyorganizations and companies are making this a trend because of the economy and costs of a real conference.What was it that made you see Invisible Illness Week as necessary? Why did you startthis?LC: For a few reasons. I began Rest Ministries in1997, a Christian organization for people who livewith any kind of chronic illness or pain, because I sawthe need to connect with others who are going througha similar journey in their life. We are also the sponsorsof Invisible Illness Week. I witnessed a lot of peoplewho were very bitter and frustrated because they feltso alone and invalidated in their pain. Some peopleeven had spouses who questioned whether the illnessexisted at all.But I also heard from family members, caregivers,doctors, churches, etc. who really did want to know how to communicate better withthose who had a chronic illness. They tried to say the right things, but it was usually thewrong thing, and so they ended up just withdrawing from the relationships.When we live with illness or pain that is invisible it is very hard for people who do nothave this daily struggle to grasp just how significantly our life can change overnight. Andone may feel that their pain is being doubted, for our loved ones are actually telling usthey think that we're embellishing the amount of pain we're in, it's easy to become bitter.Overall, I thought more communication was necessary between everyone.People I know have explained this kind of thing to me before. It does sound familiar.LC: Yes, sadly it does, doesn't it? Even those of us who say we cope well on a day-to-day basis with our chronic illness can suddenly be overwhelmed with the emotions when welegally parked in a disabled parking spot and someone walking by gives us "the look" of skepticism. Or perhaps one of our dearest friends unknowingly asks, "So, you must befeeling a lot better by now, right?" There is a difference between being sick with a coldvirus and being chronically ill. With a chronic illness you don't get "all better", butinstead you go through the seasons of the illness. This difference is hard to grasp whatyou've never tell with a chronic condition.So you decided to start Invisible Illness Week and address some of these issues?LC: Yes, I wanted to bring people together to encourage one another. I saw people bursting with joy when they had every reason not to and I knew they could encourageothers.
 
It doesn't really matter what our illness is, where we may live, our age, or how long agowe received a diagnosis, etc. The truth is, most of our illnesses are invisible and the factthat a healthy person is unable to see the symptoms we experience or the physical pain provides us with a lot more in common with one another in the similarities of our illnessever could. Once we get start talking about the emotions behind our illness we find outwe are not nearly 11 as he was assumed.What illness do you have, Lisa?LC: Rheumatoid arthritis is my main disease I struggle with. I was diagnosed in 1993 atthe age of 24. A few years after my diagnoses I started having symptoms of fibromyalgiaand 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 realchallenge. 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 illnessisn't just painful every day now, but it's hard to do dishes or drive because my hands andfeet are becoming more and more deformed. I take a lot of medications that have slowedthe disease progression down, but I've been in a new season this last year and have manysurgeries in the near future.I heard that you type with just a few fingers.LC: It's true. I type with 3 fingers and my 2 thumbs. I can still go pretty fast, butsometimes my fingers go numb. I do have a voice program, but I get impatient because Italk faster than it can keep up.How can people get involved with Invisible Illness Week?LC: Thanks for asking because just by getting helping us spread the word, for example,reading and sharing about this blog post, is the perfect start to be a part of our grassrootscause. I don't have to tell you that we don't have a marketing budget! I hope people knowthat they are making a difference just by introducing other people to our virtualconference. And not just those who are ill, but spouses, parents, caregivers. Everyoneknows someone who is ill. You can find everything about the week at our web sitewww.invisibleillnessweek.com, and we also have some fun items like buttons, tote bags, bumper stickers, silicone bracelets that say, "Invisible Illness, Visible Hope" andawareness 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 onyour blog. You can also sign up to commit to blogging about invisible illness or InvisibleIllness Week on your own blog through a service we are using called Bloggers Unite. Wehave a Facebook Cause page. You can share the 2009 video, the Twitter "Facts" we aresending out, and items like that. Be sure to remember to inform your counselor, doctors,
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