Wednesday, August 26, 2009

Lisa Copen, part 2

Yesterday I had the joy of introducing you to my friend Lisa and her work as the founder of National Invisible Chronic Illness Awareness Week (NICIAW). If you haven't yet had a chance to read part one of our conversation, please take a moment to revisit yesterday's post before picking up with us here. :)

Lisa, what was it that made you see Invisible Illness Week as necessary? Why did you start this?
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.

This sounds familiar. I've heard many people say this.
LC: It does, doesn'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.

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 really matter what our illness is, where we may live, our age, or how long ago we receIved a diagnosis, etc. The truth is, most of our illnesses are invisible and the fact that 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 illness ever could. Once we get start talking about the emotions behind our illness we find out we are not nearly as different as we may have originally assumed.

What illness is it that you have, Lisa?
LC: Rheumatoid arthritis is my main chronic illness that I cope with on a daily basis. I received my diagnosis in 1993 when I was 24 years old. At a few years after that I started having symptoms of fibromyalgia and later receIved a diagnosis. Unfortunately, I have not ever experienced remission which is what all the doctors hoped for. So the last eight years has been a challenge as disease has progressed. I realize in many ways I am blessed and could be worse off than I am now and yet in the last couple of years my illness is becoming more and more visible rather than invisible.

I don't just cope with daily pain now, but I struggle to do everyday tasks such as unloading the dishwasher or driving because my hands and feet are becoming more significantly deformed. I am on all of the medications that you can imagine to try to slow the progression of the disease down but the last year has brought me into a new season and I have many surgeries that will need to be scheduled in the near future to keep any mobility I have.

Beyond the grace of God, what personally fuels your "grace tank", the driving force that enables you to keep giving of yourself even when exhausted beyond description and living in pain?
My husband is a gem and I couldn’t do any ministry without his support. And not just emotional support, but doing the dishes, the laundry, meals sometimes, taking care of our son, and more. My son is 6 and he makes me laugh. When you are trying to explain the Lord to a 6-year-old you learn a lot of lessons yourself all over again. I also go to bed early and read a lot. I will read my Bible on my Kindle and then I love to end the evening reading some good fiction. It takes me away for awhile. A lot of times I may end up back out of bed by 12:30 a.m., but I try to at least get to bed by 9 or 10 and have some quiet time.

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.

Even with your limited typing abilities, you have written several books including one that gives 505 ideas on how people can reach out to someone who is ill, right?
LC: Yes! 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 great idea. I would think that it would be a lot easier to accept help from someone if it came in the form of a gift certificate.
LC: I think so. The cards are great for a support group, a womens ministry, or really anyone who wants a light-hearted way of saying, "I'd love to help. Here is what I am able to do."

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: 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 this week. 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!

Please join Lisa and I for the conclusion of this conversation tomorrow, where you will learn specific information about how to participate in the encouragement of NICIAW and the 20-session free virtual conference!

1 comment:

cfswarrior said...

wow-This is amazing. I'm so glad to have read this. I'm really struggling with my faith and feel lost as to how to regain it again. If you have any suggestions that would be great. I'm praying but don't feel God's presence. I'm definitely struggling with the impact of my illness.

Thank you for posting this. Maybe there is hope...