Christians Get Depressed

Continuing with our series on depression, today I am please to share a guest blog from my dear friend, Lisa Copen, founder of Rest Ministires.

Over and over I still hear from people who have been told, “If your faith was strong enough, you wouldn’t get that depressed. Jesus can heal you of that if you really want Him to.”

Oh, how sad that makes me. One reason is that I do believe that speaking to a counselor can make a difference. Like any profession, there are some good counselors, and some not-so-good, so ask for referrals from your loved ones, mentors, or church leadership. But don’t let the stigma or the expectations that Christians don’t get depressed prevent you from seeking counsel if you are feeling “blue.” (And there are many definitions of that light-hearted word “blue.”)

There is a large spectrum of depression and yes, Christians get depressed just like anyone else. I won’t share the depressing statistics with you about chronic illness and how it can impact marriages, you relationships, and your ability to cope with other stress factors in life. But let’s just say that living with illness is HARD and you should never be ashamed to seek out a counselor to get you through a difficult time.

Let me say that again (because I recently spoke to someone who kept apologizing for the fact that she was seeing a counselor)… it’s OKAY to talk to someone about what you are going through.

The best thing you can do is make sure that it is a counselor who you respect and who has the same biblical beliefs that you do. Ask people you respect, including your pastor or parish nurse who they would recommend. If you can find a god referral you can find a Christian counselor list at www.ncca.org (National Christian Counselors Association) and www.aacc.net (American Association of Christian Counselors).

And remember, just because a Christian is a counselor, doesn’t mean he or she is the right counselor for you. If you feel it’s not working or helping, don’t be afraid to find someone who can better meet your needs.

Don’t delay putting off counseling until you are feeling suicidal or making a major life-changing decision like leaving your family.

Proverbs 4:5 says, “Get wisdom, get understanding; do not forget my words or swerve from them.” It can be a blessing to get counsel from others, and pray for wisdom from the Lord.

Lisa Copen is the founder of Rest Ministries and has lived with rheumatoid arthritis since 1993.

Read more: http://restministries.com/2010/05/10/yes-christians-get-depressed/#ixzz0nv9nDCjH

Source: www.restministries.com

Side Effects May Cause Laughter

We've been talking about the very important issue of depression recently. For a change of pace, today I thought it was high time to look at the lighthearted side of living with chronic illness. Enjoy this 6 minute clip from my sweet friend, Lisa Copen. :)

Consider the Clovers

Growing in God’s Flower Garden is a sweet reminder by Lisa Copen of Rest Ministries, that we are never "overlooked" or insignificant to God. Take a moment to read it and be encouraged today. :)

...Consider the lilies of the field, how they grow...
- Matthew 6:28

Radio Link & Coping with Crisis of Top of Chronic, part 2

I just got off the phone from a wonderful radio chat with Lisa Copen, as one of 20 seakers for the free National Chronic Invisible Illness Awareness Week virtual conference. This was my second year to experience the blessing of sharing for NCIIAW - feel free to listen to last year's program on infertility, medications, chronic illness and the desire for motherhood at http://harvestinghope.blogspot.com/2008/09/blog-talk-radio.html

This year we were talking about Coping With Crisis on Top of Chronic. I had the chance to share the first half of my notes for today's talk back in August and wanted to post a few more points here today. If you haven't had a chance to listen yet, please take an hour to join Lisa and I at today's archived show:
http://www.blogtalkradio.com/invisibleillnessconf/2009/09/15/Coping-with-Crises-on-Top-of-Chronic--Chat-with-2-Gals-Who-Understand
(Note to listeners who are currently facing infertility, Lisa and I are both after-infertility moms, her through adotpion, I through childbirth, and there are some references to motherhood, including the final caller who asked about deciding to have a second child while facing chronic illness.)


As HarvestingHope.blogspot.com was the only website address that was given out during today's radio interview, I also wanted to direct you to my sidebar where you will find links to several of my other websites and/or blogs. A few to highlight are:

Hannah's Hope is my book website where you can read a free chapter of Hannah's Hope: Seeking God's Heart in the Midst of Infertility, Miscarriage & Adoption Loss and learn about other infertility and loss support resources.

InfertilityMom.blogspot.com is pretty much my "everything" page and certainly my most personal blog. It's a slice of just about everything in my life from reflections on infertiltiy and loss, to the joy of motherhood after infertility. I talk about homeschooling, and writing, and work from home businesses. Here I share more details about my personal health journey in ongoing journal format, in contrast to the more devotional and slightly one-step-back from my ongoing personal struggles that tend to be more reflected here at Harvesting Hope™. And I love to toss in some "just for fun" stuff there, like the latest contest I'm entering or occassional give-aways from me. If you want the whole package and get to know the real me with the ins and outs of my daily heartbeat, InfertiltiyMom.blogspot.com is the blog you will want to follow.

Inner Beauty Girlz is the blog I referenced on today's radio show when talking about finding a passion. It started as a little place to explore my own curiosity about natural and affordable beauty alternatives and also to journal and reflect on God's call to make myself beautiful in spirit and how I can take things I learn about caring for my body and apply them to my thought life and attitudes.
I am a consultant with both Affordable Mineral Makeup™ and Gurrlie Girl™ Christian Jewelry so I also use this blog to post product information, discounts, specials and give-aways along with my beauty hits, tips, tricks and devotional reflections.

As a quick review, my first three tips for Coping with Crisis or Chronic (click here for detailed explanations of each) were:

1. Quiet Time
- non-optional daily priority, both to refresh body and spirit

2. Laughter is the Best Medicine
- seek joy even in dark seasons, not "Polyanna theology," but "Apostle Paul theology" as found in Philippians 4

3. Support Resources
- it is critical to find, or make for yourself, a support network

Added to these, my other three tools in my survival tool belt are:

4. Find a Passion
- When chronic illness hits, it's like a rug is pulled out from under my feet. Everything I have known and simply accepted is turned upside down. Things I took for granted in the past can no longer be presumed. Skills, abilities, perhaps even joys and interests, are suddenly lost. For example, I used to do counted cross stich constantly, but when CFS hit, I no longer had the strength in my arms to hold and stich, the mental focus to count and properly follow a pattern, nor the ability to focus my eyes on those little squares without triggering a migraine. This may seem like a small loss, but it was something that had meant a lot to me and brought me much pleasure for many years, then suddenly it brought only pain and frustration. Not only did I loose something I had loved, but because of my illness and the need to lay in bed for hours on end, I had much more "time on my hands" than I knew what to do with and what I normally would have turned to as a hobby wasn't even an option.

Part of the grieving process of chronic illness is learning to let go of what I can no longer do. But on the flipside, sometimes I am forced to explore new options I might not otherwise have ever considered, and this can be a blessing. I turned to writing, initially sending long letters to my fiance who lived far away, then I began journaling in earnest, and eventually I began writing articles for publication. Had I not lost my favorite hobby, I might never have ventured onto the internet and found a world of support resources, nor written a book, nor become a blogger.

My health struggles themselves led me to search out healthier alternatives for personal care products such as makeup (since I began having allergic reactions to all the chemically based brands I tried, even "hypo-allergenic" lines) and that led me into a whole new nitch of writing on beauty, along with leading me to become a consultant with companies I found to fit my needs. So while I'm too sick to work outside the home, the hobbies that my health unfolded before me have become a small source of "egg money" income that allow me to occassionally help out with a few little extras for our family budget and I find fulfillment in pursuing my new passions in the process.



5. Be Gentle with Myself
- Others may not be, so I need to be! There will always be those who don't understand, but I am the one who lives moment-by-moment with the ebb and flow of my body's demands. I can get caught up in all the "shoulds" that other people put on me, or I can be honest with myself about my needs and abilities and give myself some room to simply "be".

In my case, my doctor has made it very clear that if I push myself as hard as I can just because I have something left to give, that my body will never fully heal. I have always had a very driven personality and want to go and do and give. But if I cannot give myself permission to make my own needs a priority, I'm headed for permant disability and continued decline that will not be able to be reversed.

Putting this concept into practice can be more painful than I wish it were. For instance, I have a heart for anyone who may be lonely or hurting. When a new woman joined church recently, she commented that she had not been able to really establish friendships at her last church, so it became personal to me to see that she felt welcome and found a sense of community quickly. She readily accepted my invitation to come over with her kids for the afternoon, though I had to postpone it several weeks due to ongoing health issues. She then exchanged the invitation and generously watched my kids for several hours while I went to the hospital to be with my parents for my mom's surgery. Since then I've not only been involved with my mom's recovery, starting a new homeschooling year with my kids, but have had a lot of medical procedures, appointments and endless medical phone calls to keep up with, including a trip out of state to see the only specalist my insurance would cover.

I simply find myself too exhausted to reach out right now. She's left the ball in my court with "call me if you want to connect," and my heart aches that she may feel like I don't want to befriend her, when the truth is that I would like nothing more, but simply have nothing to give right now. I have vaguely explained my health to her and will do my best to explain my heart and my physcial reality in more detail soon (hard topics to plunge deeply into with a brand new friend), but in the end I will simply have to accept my limitations and realize that we will have to "do friendship" on the terms by body sets forth for us, and I'll have to be OK with that reguardless of how understanding she may or may not turn out to be.



6. Let Go and Let God
- All of the above tools ultimately point to one simple fact. I can't do it all! I must let go of unrealistic expectations of myself (and of others - it's easy to become disillusioned when others I depend on or place my hopes in fall short of my expectiations) and look fully to God as not only the source of my strength, but the one who gives wisdom and directs my steps moment by moment.

He never has unrealist expecations of me. He is always gentle with me and knows, truly understands, what I face moment by moment.

My job is simply to do what He calls me to for this moment and leave the rest to Him. Some days that may simply be getting through the day without giving into utter despair that I can't raise my arms with enough strength to brush my hair. Some days that may be trusting him that if my new friend needs friendship that I'm not equiped to give, that maybe I'm instread called to pray that God will meet that need for her through someone else.

When recently undergoing some very frightening treatments that had me reflecting on my own mortality, I realized that I was not really handing the reighns of my life to God. I had written love letters to every family member and placed them in my journal where I thought they would be found if I should die. I was peaceful about the prospect of death for my own sake, but I was a ball of nerves for the sake of my husband and children, grieving for them about what they might endure should I die. And then it occured to me of how arrogant I was being, to say I could trust God with my eternal future, but then actively distrust Him to have a perfect plan for my husband and children!

Just simply realizing that a God big enough to hold my eternity in His hands would have a great plan for my family too was a significant "letting go" moment that marked a wonderful return to a peaceful heart for me. As it turned out, I was His ongoing plan for my family and I had let myself get all worked up for something that never was really even an issue, but I pray that I will hold onto that life lesson next time I'm tempted to try to micro-manage God's plan rather than just resting in Him that He will take care of every need, big or small.



I would encourage you to take advantage of any or all of the 20 Invisible Illness Week seminars available to you this week, and archived for ongoing listening, at http://www.blogtalkradio.com/invisibleillnessconf. Please log back in here at www.HarvestingHope.blogspot.com again on Saturday as well, for a special post on Hope in the Shadows as part of the (In)Courage blog tour.

National Invisibile Chronic Illness Awareness Week

I will be presenting at noon (Pacific) this Tuesday, on the topic of Coping with Crisis on Top of Chronic...

SBWIRE – SEPT 14, 2009 / Nearly 1 in 2 people in the USA live with a chronic illness and about 96% of these illnesses are invisible.* Rest Ministries, Inc., the largest Christian organization that serves the chronically ill, and an affiliate of Joni Eareckson Tada’s International Disability Ministry, is encouraging those with illness, friends, family, caregivers, and churches to get involved in their annual outreach, National Invisible Chronic Illness Awareness Week, September 14-20, 2009.

In addition to churches having outreach events for those with chronic conditions, Rest Ministries organizes a 5-day free virtual conference with 20 seminars that can be attended via one’s computer and computer speakers. Seminars are on a variety of topics including marriage, parenting, starting a business, how to apply for disability and more—all when you live with a chronic illness. The seminars are held via Blog Talk Radio and listeners can call in through their phone line with questions.

Well known Christian authors who will be presenting include:

• Bill and Pam Farrel, best-selling authors; The Marriage Code (Harvest House, 2009)
• Naomi Kingery, author of Sugar Free Me (Xulon Press, 2008)
• Dena Dyer, author of Mothers of the Bible (Barbour Publishing, 2009)
• Georgia Shaffer, author of How Not to Date a Loser (Harvest House, 2008)
• Joanna Faillace, Certified Biblical Health Coach an author of Super-Naturally Healthy Families Cookbook Devotional
• Lisa Copen, author of Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Rest Publishers, 2008)
• Maureen Pratt, author of Peace in the Storm: Meditations on Chronic Pain & Illness (Galilee Trade, 2005)
• Jennifer Saake, author of Hannah’s Hope: Seeking God’s Heart in the Midst of Infertility, Miscarriage and Adoption Loss (NavPress, 2005)
• Marcia Ramsland, author of Simplify Your Life (Thomas Nelson, 2004)
• Jolene Philo, author of A Different Dream for My Child (Discovery House Publishers 2009)

Lisa Copen, 40, founder of Rest Ministries says, “Many Christians may have a solid walk with the Lord, but the emotional rollercoaster of a chronic illness and its constant progression can leave them feeling alone and misunderstood. They are hanging on by a thread and being told they look fine and should just make themselves get up and go to church only adds to the isolation and bitterness of others ‘not getting it.’ The emotional scars can be harder to cope with than the actual illness.”

Copen, who has lived with rheumatoid arthritis and fibromyalgia since the age of twenty-four, ended up in the hospital for a week last fall fighting off the flesh eating bacteria in an ankle wound. We never know what the next day will hold,” she explains. “It is so important that there is good communication between those who are ill and their loved ones, as well as the church body.”

Did Copen’s circle of friends and church come through for her? “It was an enlightening experience,” she says. “Although I teach others to ask for help, I found out how difficult it is. And then when I did ask for help, I experienced what it is like when you fall through the cracks and everyone thinks someone else is providing both the practical support as well as emotional encouragement.”

Rest Ministries extends their outreach about invisible illness awareness to churches, providing materials to start up HopeKeepers groups, books, cards, tracts, etc. About 96% of those with illness may appear perfectly healthy on Sunday mornings, but may struggle to get out of bed the remainder of the week.

Ken Chambers, Director of Church Relations at Joni and Friends International Disability Center, says, “It is vital that Christians understand the emotional and spiritual trials of those with invisible disabilities, as well as those with visible disabilities. I encourage church leaders to take advantage of the wealth of resources at Rest Ministries and to participate in the National Invisible Chronic Illness Awareness Week, which they sponsor annually.”

One can get involved by joining the hundreds of bloggers who are writing about illness in the next few days, by joining the cause on Facebook, and most especially, by tuning in for the conference. All seminars will also be recorded and archived.

See www.invisibleillness.com for more information or www.restministries.org for the sponsor of this event, Rest Ministries.

*Source: Chronic Care in America, U.S. Census Bureau

Lisa Copen, part 3

It has been a delight to share this ongoing conversation with Lisa Copen, founder of Invisible Illness Week, over these past three days. If you have missed the previous two parts of our conversation, please visit Tuesday's and Wednesday's post before coming back to join us here. :)

Lisa, 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?

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 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.

Lastly, my faith in the Lord is the foundation of how I cope with my illness, and so I couldn't walk away without at least encouraging them to give God a try. They may have had some negative experiences in the past with a church or Christians, but people are not perfect, and God really does have a plan for their life. And it's God's "Plan A." The illness hasn't bumped their life down to "Plan B." I can admit that this sounds cliche. But each day I hear from people who tell me about how their faith in God is the one thing that gets them up the morning and keeps them looking forward to the next day, rather than dreading it.

As you have been working to get out your message about National Invisible Chronic Illness Awarness, how have you seen blogs and twitter and other forms of social media make a difference, Lisa? Has social media increased how you've been able to reach more people this year to inform them 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 are giving away prizes to people involved in these different areas of outreach.

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

LC: Thanks for asking! Just 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, 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 looking for bloggers who would like to be a guest blogger on our web site. Or you can just sign up to commit to blogging about invisible illness and Invisible Illness Week on your own blog through Bloggers Unite. We have a Facebook Cause page of course, so it's easy to share with friends and family. Share the video, the twitter "illness facts" we are sending out, things like that. Be sure to mention Invisible Illness Week to your counselor, doctor, pastor, peers, colleagues; we have brochures too.

Some people use this week as an opportunity to call their local paper and share about the week, their support group and their illness, and get featured in a story. Since it's listed in Chase's Annual Events journalists can tie it together.

Lisa, as always, it has been a delight chatting with you. I'm praying for you and for all the men and women in need of support like the kind they will find at the virtual conference next month! I'm looking forward to sharing with you voice-to-voice at noon on Sept. 15 as we talk about Coping with Crisis on top of Chronic and I'm so excited by the descriptions of all the different conference sessions and great speakers lined up this year!

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!

My dear friend Lisa Copen

I'm happy to once again introduce you to my dear friend Lisa Copen, a great personal encourager to me for many years. She is also the founder of National Invisible Chronic Illness Awareness Week. This year NICIAW is September 14-20, 2009. Lisa is on a blog tour to help increase awareness of the week and its 5-day free virtual conference (where I'll be on of 20 radio guest talking with her throughout that week). There are lots of ways to get involved and since Lisa has so much great information to share with us, we will be spreading out these Q&As over the next few days.

Hi, Lisa. Thanks for connecting with us here today at Hope Harvesters™.

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.

It is wonderful to see the growth in both volume and quality of awareness and support! :) 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.

It's 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.

Why do you feel God has given you such a passion to advocate for the chronically ill, especially those of us with invisible illnesses?

LC: Honestly, I wish I knew. I never would have “chosen” chronic illness ministry—it chose me! And no matter how tired I get or overwhelmed with the business side of the ministry, I know this will be a passion of mine until the day I die. I just see so many people hurting who just want one person to talk to who understands. They just want one pastor to say, “I’m worried about you. How can we help? REALLY?” I see so many who are left by their spouse, abandoned by their children, misunderstood by their dearest friends. It’s so disheartening. The Christian community has a huge opportunity to minister to these people and include chronic illness ministry and outreach into their church alongside divorce recovery or widow ministries, etc. I don’t understand why it’s so hard to break down the resistance except for the fact that no one wants to acknowledge that illness isn’t always healed here on earth.

Explain the idea of a "virtual conference" to us. What's that?

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's a great idea! So are last years programs available too?

LC: They are. We used a chat room originally so we had written transcripts, but one can hear 2008's programs can be heard from a computer, itunes, or even purchased on a CD.

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.

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.

I'm looking forward to talking with you more tomorrow about exactly what is involved in a "virtual conference" and learning more about your personal story and your heart for all of us facing the daily struggle of invisible and chronic illnesses!

Coping With Crisis on Top of Chronic, part 1

This is "part 1" of a 2-part series of notes for a radio program on Coping with Crises on Top of Chronic; Chat with 2 Gals Who Understand where Lisa Copen and I chatted for National Invisible Chronic Illness Awareness Week. For "part 2" of these notes, follow the link at the end of this message.

A couple of weeks ago I was fighting the first day of a migraine (it ultimately lasted 13 days in spite of medical efforts to subdue it) when I got a phone call from my lab. There had been an issue with my recent blood work and it needed to be redrawn as quickly as possible. I figured I could wait until the headache and accompanying spotty vision abated enough to allow me to safely drive, then I could manage to get myself to the lab that was 10 minutes from home, sometime later in the week. Unfortunately, as the lab tech continued to apprise me of the situation, I realized that the vial that needed to be redrawn was one I had done nearly three weeks earlier at the specialty lab over a windy mountain pass nearly an hour away.

My phone rang at about 11 on a Tuesday morning and I had to have the redraw prior to an IV I would receive that next Sunday. Because of Post-Infectious Chronic Fatigue Syndrome (ME/CFS), my driving ability is limited to about half an hour from home and only on relatively straight roads, even on my best of days. The location of the lab already meant I would have to call in outside help to get it done. Not only would I need help, but I would need to be rather demanding about how and when I received that help because the specialty lab only does these specific draws on Mondays, Tuesdays or Wednesdays before 1 PM. I had to somehow either get myself to the lab within the next two hours that very day, or hit a specific five-hour window the next. If I could not arrange childcare, someone to drive me, and cope with the effects of motion sickness on top of my migraine misery before 1 the following afternoon, I would have to try to reschedule my IVIG therapy for a second time, the treatment we had fought for the past 18 months for insurance approval to be able to begin!

My mom, who was herself dealing with pre-op workups for a knee replacement surgery, helped me figure out a plan for my dad to drive me and three kids up the mountain the following morning and still get back down to town in time for my x-rays at the orthopedic surgeon’s office the next afternoon. I certainly didn't want to miss that appointment and delay my hopes of getting my broken foot out of a cast after 10 weeks of slow healing! Before the week was over, Mom would also end up driving me to my primary care doctor’s office for migraine shots two days in a row. As I tried to juggle all those different medical demands, I joked with my mom that I never knew that being sick could be such hard work!

Do you ever feel like living with a chronic illness is a full-time job? And as if managing your “regular” health challenges isn’t complicated enough, what do you do when a crisis situation comes along on top of the daily juggle of pain, unpredictable symptoms, medical care and the financial strain that can accompany it all? Life doesn't just stop because of illness. Accidents, sorrows, trials and tragedies (as well as joys, victories, accomplishments and achievements) of all proportions still happen around and to us. When just coping with chronic already overwhelms us beyond our limitations, how do we keep from being done in by crisis, the surprise "extras" that come along?

I certainly haven’t figured out all the answers, but after living my entire adult life under the shadow of Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS) and taking some crisis journeys through unemployment, infertility, a few outside medical emergencies such as this broken foot, and several encounters with death, grief and loss, I have learned a handful of coping skills along the way. When crisis hits on top of chronic, here are a few simple survival tips I can fall back on:


1. Quiet Time.
This is a non-optional survival skill for me in daily living with chronic illness. While I might be able to scrape by for a few days without making scheduled downtime a priority, I can’t function on a continual basis without it. In a crisis situation I might be tempted to try to push through on adrenaline for a while, but if don’t make a conscious effort to slow down sooner rather than later, I will pay for it with a significant physical and emotional crash that will be hard to recover from. So while it may feel like there is no time to even catch my breath, in times of crisis I must be aware of my need for regular “time outs”.

There are two ways that I implement this concept in my life. The first is through daily “quiet time” every afternoon in our home. My kids are 9, 6 and 3 and know that every afternoon we will pile into my bed together for story time (sometimes I can barely get through a short, simple picture book that I ask them to read to me while on better days I might be able to read two or three chapters of a novel with them) then everyone will go to their own rooms and sleep or read or play quietly for at least 90 minutes. We have done this since the oldest was a baby. (I encourage moms who are newly trying to implement this technique with older kids who might be resistant to the idea, to start with even just 15 or 20 minutes and work your way up.) On days when I can barely function and wonder how I will ever make it through the day, I know that if I can hang on until quiet time, I will have a chance to recharge at least a bit; on these days quiet time sometimes becomes 2 or 2½ hours rather than just our regular 1½.

On a spiritual level I need daily quiet time as well. God calls me to “Be still, and know that I am God…” (Psalm 46:10). In my weakest moments it might be all I can give to simply lay still and try reflect on who God is, being thankful that He loves me, broken as I am. Other times I can make a more active pursuit of knowing God by spending time reading and meditating upon His Word (my Bible), by praying (simply talking to God) or journaling my thoughts to and about Him. It is only in stilling this most inward part of my soul where I find the greatest refreshment and benefit of quietness and intentional rest. The words of Isaiah 30:15 are so very true; in quietness is where I find my strength.


2. Laughter is the Best Medicine.
Cliché, but true none the less. I can always tell when my husband is feeling stressed, especially over my medical needs, because it is in these times that he most frequently turns to humor to help us through. I cannot even begin to count the times he’s had me giggling with his tongue depressor puppets, or exam glove balloons, or silly comments only the chronically ill could love, as we’ve sat in cold exam rooms waiting for doctors to show up.

Going through fertility treatments I had to get really creative about finding ways to laugh at hormone injections and very invasive testing and treatments. I remember driving across town one day with a sperm sample in my bra (to keep it the correct temperature) and bursting into semi-hysterical laughter at the thought on how on earth I would explain that to an EMT if we were to get in a car accident on the way to the clinic and they would have to cut me out of the wreckage with the Jaws of Life! Sometime laughter is the only way to avoid tears.

Tears and laughter can co-exist as well! Funerals are typically solemn times of amplified grief. But have you ever found those in that inner circle of family and closest friends gathered around together and laughing at funny memories of their loved one’s life? Sometimes laughter comes through tears, but can be just as healing.


3. Support Network.
Did you cringe a little when I was talking about my husband’s playful support at my doctor’s appointments, my dad’s willingness to be both chauffeur and babysitter for my distance blood draw, or what it’s like to be in an “inner circle” of family and friends at a funeral? While I’ve been more blessed than most in this area, I know that support doesn’t typically come easily. We’ve had seasons when we didn’t live near extended family, had few friends, were not involved in a church, and my husband worked 80-90 hours a week. I felt incredibly alone and afraid without anyone to lean on. It was then that I learned just how important it was for me to make the effort to find/create a support network for myself (even when I felt like I have no energy to make that effort)!

Surrounding yourself with support is ideally accomplished before you are faced with a time of crisis, but often seems hard to find. I think this is true because others may not see or truly understand our need for help through the daily grind of chronic. It can be humiliating to ask for help too, even when we are crying out on the inside, “I’m so alone!” When we are faced with crisis, sometimes (not always) support more readily presents itself. When it does, it’s important to take that help offered, though we would all rather be self-reliant enough to not need it.

OK, so you are ready and willing to accept any support you can find, but can’t find any. Now what? Your doctor, hospital, local social services or place or worship are all possible starting places when looking for a support network. I’ve said over and over that I don’t know how people survive without the support of a local church family. Even though I have great family support now, including my parents who moved from out of state just to be near enough to help, I am still thankful for the additional help and encouragement from church friends and local support group members. Being involved in a supportive network also lets me feel like I have something to give back to others, maybe not in helping meet physical needs, but there is hope and purpose simply in sharing my story and showing someone else that she is not alone either.

Another huge advantage we have in the age of the internet is that there are support websites and message boards for just about any issue you can imagine, even those “one-in-a-million” type illnesses. If you can’t find an existing one to meet your needs, there are many free places to create your own online community. When you become a part of an online support network, you may not find someone in your own backyard who will be there to drive you to your next doctor’s appointment (but then again, you may make just such a connection!) but you probably will find many others who personally understand the fears and frustrations of your challenge, be it chronic or the crisis variety. I participate in several online support networks such as Rest Ministries (support for any form of chronic pain/illness), Hannah's Prayer (infertility and pregnancy/infant death support), and many disease-specific forums.



I realize these are only three small places to start the coping process, but this post is already getting quite long, so I’ll save my next three tips for another day. If you want a few more ideas right now, check out Finding Courage in Crisis, an interesting article I ran across earlier this month. I'm always looking for new coping concepts to tuck away for times of need. So how do you cope with chronic, with crisis, or with crisis on top of chronic? I really would love to hear what you have to share!!!


For more on this topic, join Lisa Copen and I as we talk (yes, in our real voices) during the National Invisible Chronic Illness Awareness Week Virtual Conference on September 15. Between the two of us, Lisa and I have survived 45 years of multiple chronic illnesses including Fibromyalgia, Chronic Fatigue Immune Dysfunction Syndrome (ME/CFS), Rheumatoid Arthritis (RA), Diabetes, Endometriosis, Polycystic Ovarian Syndrome (PCOS/PCOD), infertility, chemical sensitivities and more. We know that life doesn't stop just because we are in pain. Hear our radio chat as we share our hearts and experiences through surgeries, infections, IV therapies, broken bones, unemployment, adoption journeys, and grief ranging from miscarriages to the deaths of grandparents. We will talk about survival skills for coping the stress of everyday life when crisis hits and we'll look forward to chatting with you as you call in your own crisis on top of chronic stories too.

Go to HarvestingHope.blogspot.com/2009/09/crisis-chronic-2.html for "part two" of these notes or listen to the radio program at http://www.blogtalkradio.com/invisibleillnessconf/2009/09/15/Coping-with-Crises-on-Top-of-Chronic--Chat-with-2-Gals-Who-Understand.