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

August 26, 2009 at 8:00 AM Leave a comment

Lisa Copen joins us today as the founder of National
Invisible Chronic Illness Awareness Week
. This year it will take place over 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. Read on!

Lisa Copen

Lisa Copen

Thanks so much for joining us today, Lisa, here at Delicious Health’s 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. That’s quite a mouthful!

LC: It is. A lot of times we just call it Invisible Illness Week. 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, communities, 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.

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 our readers 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 available. Before 2008 we used a chat room for seminars so we
had written transcripts, but now one can hear 2008’s workshops directly from a computer, at tunes, or 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.

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

LC: For a few reasons. I began Fest Ministries in 1997, a Christian organization for people who live with any kind of chronic illness or pain, because I saw the need to connect with others who are going through a similar journey in their life. We are also the sponsors of Invisible Illness Week. 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.

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 didnt 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.

Having lived through chronic, excruciating pain and having being told through most of it that I “looked great,” I can relate. It was frustrating, isolating, and disheartening, to say the least.

LC: It is, isn’t it? Even those of us who cope rather well with our illness
on a day-to-day basis can still have moments of frustration. We may park legally in a disabled parking spot and we get the look from someone walking by. A friend may ask, So are you all better now? People don’t always comprehend the difference between being sick and being chronically ill.

animated

 

So this is what made you decide to start Invisible Illness Week? To start some communication about these different issues and emotions?

LC: Yes, I wanted to bring people together to encourage one another. I saw
people burting with joy when they had every reason not to and I knew they could encourage others.

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 live with, Lisa?

LC: Rheumatoid arthritis is my main disease I struggle with. I was diagnosed
in 1993 at the age of 24. A few years after my diagnoses 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.

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 get involved with Invisible Illness Week and find out more information?

LC: Thank you for asking because just by helping us spread the word, for example, sharing about this blog post or by linking to it or posting it on Facebook, is the perfect ways to help our grassroots cause. I probably don’t have to tell you that we don’t have a marketing budget! When people introduce their friends or family to her virtual conference or retweet out our twitters or articles, they are making a significant difference. We also have some fun items to help spread the word like buttons, and tote bags, silicon bracelets that say “Invisible Illness, Visible Hope,” awareness pins, and of course bumper stickers.

Our theme this year is “A Little Help Gives a Lot of Hope.”

We are also accepting blogs from people to be featured on our site as a guest
blogger. 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, our twitter facts about illness, things like that. Tell your doctor, counselor, pastor, 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 it’s listed in Chase’s Annual Events, journalists can tie in the personal story with the annual event.

How has blogging and twittering and other forms of social media made a difference? Has it helped in how you’ve been able to let people know 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!

We have over 1600 people who have joined our cause on Facebook. And we have some amazing prizes we are giving away to people involved in these different outreach areas.

There are so many people who feel really alone, as if no one in the world can possibly understand how much they are suffering. What would you tell these people?

LC: If I could I would just give them a long hug and sit there beside them
to listen first. Listening is one of the hardest things to do! I struggle with
it myself! But I know that is what people need.

Secondly, I would also validate that they are right–no one really can understand what they are going through. Illness is a unique and lonely experience. That said, there are a lot of ways to connect with people who understand more than they may expect; they just have to find them. There are lots of ways online to connect when you can’t drive to a support group. Our social network is Rest Ministries Sunroom and I recently began Illness
Twitters
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: I do. It’s called “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.” It’s actually a very helpful book because 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 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 (errands, laundry, taking your child for a play date, etc.) and when the best time is for them to volunteer to help.

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. Sometimes asking for help is really hard to do.

LC: Yes, that’s the idea. The cards are a perfect addition for a women’s ministry, a support group, or really anyone who wants a way to say, “I’d like to help. Here is what I am able to offer to do.”

What are some suggestions you have for approaching an invisible illness with positivity versus hopelessness?
 
It would take me a book to answer that (smile) but here are some of my best tips:
 
Learn the balance between being a good advocate for your health/illness and well-informed and digging too deep into the information on the internet and symptoms. You need to be well-educated, but not obsessed about your illness and all the things that “will” happen to you. You may never experience some of the symptoms or the severity and there is not “normal” for any particular illness. Each individual is different.
 
Have reasonable expectations of others and be honest with yourself about your communication skills. People will say the wrong thing or not react to your symptoms or comments the way you wish they would. Truthfully, do you even know what you want or need?  Whether you need to improve communication with your spouse, kids, parents or friends, learn to do it with grace and not get too emotional about it all. Learning to say, “I need to find a place to sit down” to “I am just going to stay and hour” is part of a lifelong learning process, but the sooner you learn it the easier your life will be.
 
Find a friend who understands some of what you are going through. Whether it is a loved one, someone from a support group, or an online friend, it really only takes one person who speaks the same language to help add perspective to your situation.

Search your soul for what is going to get you through those darkest moments when a friend, medication, or a cup of tea comes up short. For me, that is my faith in God and the ability to know there is a purpose in it all. Knowing I am doing my best at living health with an illness, yet my body still turns on me, makes me feel out of control. It’s these times I most heavily rely on knowing God is in control and I’m not just spinning in a universe without meaning.

Thank you again so much for joining us today, Lisa. And thank you for starting National Invisible Chronic Illness Awareness Week. I know that you have your own health struggles and that you are also a wife and mother, so I know it can’t be easy to do it all.

LC: Honestly, it’s not, but it has always kept me going too and I couldn’t
do it without my husband’s support. Thank you for hosting me at your blog today! I hope all of your readers will visit us at National
Invisible Chronic Illness Awareness Week
and let your friends know about our free 5-day virtual conference! We’re going to have a great time!

Advertisements

Entry filed under: cool news, delicious health, delicious health news, events, health, Invisible Illness Awareness Week, living.

Stuffed Green Peppers – Turkish Style Cook! SF’s Fall Cleanse – Delicious, Easy, and with a Special Discount for Delicious Health Peeps!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Trackback this post  |  Subscribe to the comments via RSS Feed


RSS Feed Sign Up

Recent Posts

Tweet with Me!

Categories

Top Posts


%d bloggers like this: