Thursday, August 27, 2009

Interview with Lisa Copen



I am pleased to welcome Lisa Copen to my blog today! She is the founder of National Invisible Chronic Illness Awareness Week. This year the awareness week is September 14-20. Lisa is on a blog tour to share about the event and how it can specifically encourage you.

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Rachel: Hi, Lisa. Thank you for stopping by One Day at a Time to chat with us!

Lisa: 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.

Rachel: Yes. Blogs have indeed helped to spread awareness of chronic illnesses, and speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week. That's quite a mouthful!

Lisa: 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.

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.

Rachel: I have heard about the virtual conferences that happen during Invisible Illness Week. Will you explain what a virtual conference is to my readers?

Lisa: 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 Qwareness 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. 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.

Rachel: That sounds great. 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.

Lisa: 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.

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

Lisa: For a few reasons. I began Rest 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.

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 is 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.

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.

Rachel: 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?

Lisa: 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.

Rachel: What illness do you have, Lisa?

Lisa: 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.

Rachel: I heard that you type with just a few fingers.

Lisa: 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.

Rachel: How can people get involved with Invisible Illness Week and find out more information?

Lisa: 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 its 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, 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 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.

Rachel: 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?

Lisa: 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 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.

And lastly, since my faith is in the Lord, I would want them 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 myself to be true.

Rachel: What is something God has taught you that you would not have learned if it weren't for living with a chronic illness?

Lisa: The value of life and the ability to feel so carefree. I know that sounds cliché’ and my friends would even say they aren’t feeling carefree – they have lots of worries! But I see people my age who don’t understand how blessed they are to not have to worry about what their lab tests are going to say, how they will pay for medical expenses, who will take care of their children as they recover from their fourth surgery. They can make travel plans and know the odds of them going are pretty high. In the ministry, I see so many people with illness who also get cancer or lose a spouse from cancer. They are so blessed. My grandmother is 94 and has been in perfectly fine health most of her life. She is annoyed right now that her knee is a little stiff in the mornings but she could “out-walk” me in distance and speed any day. God has truly given me the ability to know how precious times are; to take time to enjoy the moments with my family. To know life has no guarantees and that we have to make the most of every moment—try to live without regrets.

Rachel: What advice do you have for other mothers who have a chronic invisible illness?

Lisa: Take an hour at a time! Seriously, I am learning this every day. My son is 6 and in some ways it’s easier now because it’s less of a physical task to get him up and ready every day for school. My husband helps a lot. It’s a lot different than when I was changing diapers and using the stroller for every outing. It can be exhausting, but just remember that every new mom feels exhausted. Yes, I know those of us with illness are more tired, but this is just what we’ve been dealt, and so we may as well enjoy the joy of being a mom.

Learn to accept help. Even if you are 23, ask the grocery clerks to put the groceries into your car for you while you put the baby in. Ask your friends to pick up milk at the grocery store for you. Buy bottles and diapers and pajamas (for both you and the baby) in bulk so the world won’t stop if dishes or laundry doesn’t get done.

And force yourself to get out of the house, especially if you are the mom of just one child. Look in your local city’s kids papers or magazines for outing ideas. There are coffee houses that have Thomas the Train sets; there are play areas that are enclosed; there is even hourly child care that can be a great relief on days that you are really sore.

I am working on a Christian moms with illness book now, so would love to hear all of your reader’s ideas!

Rachel: I'll ask them to share some ideas in the comment section, and I'll pass them on to you. Thanks again for joining us today, Lisa, and thank you for organizing Invisible Illness Week. I know with your own health issues and with also being a wife mom that it can't be easy.

Lisa: You are right, it isn't, but its more than worth it! The people I meet or email each day keep me going and I have a husband that 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!



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Do you have a chronic illness? An invisible illness? Please share about it with us in the comments section. I'd like to hear about the challenges you face each day. Let's encourage and inspire each other and help to spread awareness.

If you are a mom with an invisible illness, please share some advice you'd like to give to other moms with a chronic illness. I'll send Lisa an email and pass on your ideas. Maybe some will even show up in her book! :)

Thank you for reading and for letting Lisa and me share about Invisible Illness Week!

5 comments:

Jesslikesstuff said...

Rachel! You're back! Wonderful! I was wondering where you went :).

What an interesting interview. The concept of "invisible illness" wasn't really on my radar before. I suppose it's a lot like mental illness in some ways...people can't see it and it's still not fully accepted as "real" by the general public.

Reading this is another important reminder that "you don't know what's going on behind closed doors"....it's SO true!

Thanks for posting and great to "hear" from you again!

emily said...

Wow! This is fantastic.
I was so excited to see a blog post from you b/c I check every day and wonder how you are doing. :) Obviously this blog doesn't give me the scoop on YOU, but it is a fantastic post to have!
Your good day and honest updates were fantastic...I don't think I ever commented on them. I've read them all, but think I fell off of the comment wagon. They really gave me a lot more insight into your daily life.
Well, I'm not a mom with invisible chronic illness, so I don't have any advice there. But you know plenty of my experience otherwise!
Thanks for this post. I can't believe you got to do an interview and have it on your blog. Super cool.
Here's to going to the movies in our recliners and taking up the whole row with a group of fellow folks with invisible chronic illness!
Love you,
Em

Qavah said...

Thanks for posting this Rachel! I have been to this site before and went back again to look around. What a great resource! I enjoyed reading your interview. :)

Ashley Clark said...

I think that it is great that you have a blog like this to help make people more aware of these things :)

Happy SITS Sharefest!

Ashley ♥
http://ashleyclarkphotography.blogspot.com/

Pam said...

This is a wonderful post. Thank you for bringing awareness about invisible chronic illness. My daugher has spent the last 4-5 years with a mysterious illness of the immune system, that, for now, is being called chronic fatigue/immune deficiency syndrome. She has had times of remission and times of relapse that have stolen her life and has caused her to remain bedridden for months at a time. Friends have a hard time understanding, since she looks more well than she is. She has started new schools and has been unable to finish the year, due to illness. It's been a nightmare for her. Bringing awareness to these illnesses is so important. God bless you.

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