The Ministry of Lisa Copen

Lisa Copen, Founder of Rest Ministries which serves the chronically ill, shares about mothering, illness, ministry and more.

Archive for National Invisible Chronic Illness Awareness Week

Interview with Lisa About Invisible Illness Week

Lisa Copen joins us today as the founder of National Invisible Chronic Illness Awareness Week. This year it is 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.

Tell us about National Invisible Chronic Illness Awareness Week. That’s quite a mouthful!

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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.

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 me what a virtual conference is.

LC: 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 Awareness 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.

Really? So are last years programs available too?

LC: They are. Before last year we used a chat room and had written transcripts, but 2008’s can be listened to free from your computer, downloaded from itunes, or 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? 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.

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

LC: 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.

People I know have explained this kind of thing to me before. It does sound familiar.

LC: It does sound familiar, doesn’t it? 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.

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?

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 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 have, 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. 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.

09_blogging-badge2How can people get involved with Invisible Illness Week and find out more information?

LC: 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.

Has social media made a difference in how you have been able to spread the word 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!

Over 1800 people have joined our cause on Facebook. We’re giving away prizes to people who blog and tweet on the topic.

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: 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.

You have a book out that gives people ideas about how to help a chronically ill friend, don’t you?

beyond-cassroles-bookLC: 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.

What a great idea. It seems like it would be easier to accept help if it was in the form of a gift certificate.

LC: Yes, that is the idea. Groups like a support group or a women’s ministry
will find these perfect, but they are also nice for anyone who wants to help
a friend and say, “Here is what I can do to help and a good time for me.”

Thank you again for joining us today, Lisa. Thank you for organizing Invisible Illness Week. I know with your own health issues and that you are also a wife mom it can’t be easy.

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.

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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I Don’t Feel Lucky That My Illness is Invisible, But Am I?

handOftentimes we only see the negative side of living with an illness that invisible to most people. But as time progresses, so does my own illness, rheumatoid arthritis. I can now see that there are advantages to having an illness that can be hidden or revealed, based on one’s own desires or certain circumstances.

I rarely see the changes in my own body, such as my hands or feet deformities, unless I see a reflection in the mirror, for example when I am trying to clothes in a dressing room at a store.

I’ve heard children ask their mom, “What is wrong with her feet?” as they’ve looked under the divider from a nearby dressing room. I can’t help but wonder how people don’t realize I have some sort of illness when they see my hands and fingers.

In the documentary about Farrah Fawcett’s journey with cancer, her son made a comment like, “I know she will be okay. She just looks so good.”

Those of us with invisible illnesses were likely yelling at the television because we too have heard, “But you don’t look sick.” But it was true. There were days when she did look like the blond bombshell we all remember from the posters. But there were many other days when she looked like someone fighting for her life.

There is no doubt it can be frustrating to look healthy when you are feeling like you have the flu times ten. And yet, if we were to really be honest, do we want to look as bad as we actually feel?

There truly are some benefits to having a disease that isn’t immediately noticed by everyone you come into contact with. Lets take a second look at a few of those perks.

[1] You get to choose who to reveal your illness to and who not to. Some people you may immediately confide in; others you may wait and see if they feel “safe.” Some people you may never tell about your illness.

[2] You can avoid unwanted advice. When your illness is visible, even the person in line at the grocery store feels the burden to share the latest cure for your condition or tell you what you should be eating. With an invisible illness, no one knows and offers comments unless you choose to mention it. And then you chose to open up that whole can of worms.

[3] You can do you job without preconceived ideas about what you can and cannot do. At some point you decide who to reveal your disease to, but if you are doing your job successful, you may be able to keep it personal for years.

[4] You aren’t on the receiving end of pity or sympathy stares. People who use assistive devices like a cane or wheelchair, or who have a visible illness, must learn to not care what other people (both friends and strangers) may think when they see them shaking, or struggling to walk.

[5] You can fake it! If you want to just forget your illness and go out for a night with friends, no one has to know how much medication you took just to be able to go out. You don’t have to explain why you aren’t dancing. It can seem like your life is constantly controlled by your illness, but ultimately, you still can choose to put on some fun clothes pretend to be healthy and carefree for a few hours.

Living with an invisible illness, or what some call a hidden or invisible disability, can have plenty of negative aspects and this article does not attempt to belittle them. However, to truly live life to the fullest, we must count our blessings.

Some days the simple miracle of being able to look healthy despite feeling terrible is worth acknowledging and accepting it for what it is.

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Training Conference Online on How to Start a Ministry

Do you want to know how to begin and succeed in online ministry?

A Woman Inspired is having a virtual conference June 8th – 11th!

They have a great line up of speakers and it’s somewhat similar to the conference we put on for National Invisible Chronic Illness Awareness Week in September.

Here is some info about it. It’s about $12 or so to “attend.”

How do you begin? What should your boundaries be? Must I Twitter and Facebook? If so then what are the advantages. Are these friendships that you are forming real or imagined? Do you need a blog? How can you branch out?

We have a team of ladies who are very educated in the ways of the internet and online ministry. They can show you how to begin, maintain, branch out, and even how to deal with adversity. This conference is for anyone who is ready to make a difference via the internet.

An online audio conference uses the Internet as a conference venue. What this means to you is that you will be able to access the conference from anywhere in the world using standard browser software which we provide. This software is compatible with all computers including Macs and it is provided by us, to you, with the cost of admission. All you need is a computer, internet connection, and speakers!

The conference will happen in real time but it will be recorded so if you can’t be there then you can still download the sessions to listen to at your convenience.

> Read More

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ARTICLE: You’re Too Young to Be That Sick!

reprint No Pain, No Gain. You are too Young to Give in to Illness
by Lisa Copen

I was twenty-four years old, enthusiastically living in new city, finding my independence, careers, and following my heart when I became disabled in a period days and was eventually diagnosed with rheumatoid arthritis. It only took about four weeks, but with two visits to doctors a week, explaining my significant pain, it felt much longer.

Eventually I found a wonderful doctor of internal medicine who asked me about fifty questions. In about two days I had a diagnosis.woman1 Despite the terms “chronic” and “forever” I felt relieved to know the label that described my chronic pain.

Few of my friends, however, shared my enthusiasm for a diagnosis. The managers at my office were more concerned about the fact that I wasn’t wearing heels to work anymore, making me look less professional. They quickly flung the words, “You’re too young to feel so bad!”

They always confused rheumatoid arthritis as being related to typical arthritis their grandmothers suffered from, exclaiming, “You can’t have arthritis yet.” Some tried to sympathize, comparing my fatigued body to a sports injury they had dealt with. “Oh yeah, I have some arthritis on my knee from football. It’s not fun, but you just have to push through the pain.” Oftentimes, the comments were accompanied by the wave of a hand or the rolling eyes.

When you are diagnosed with a chronic illness while in your twenties, all typical decision making it thrown off schedule. This time in your life should be about choices for areas of education, a career, relationships, and even where you will live. Instead, all of these decisions are put on hold and you must make more life-changing choices – fast!

How you accept (or do not) accept the diagnosis? What medications should you take? What is the risk of side effects and are worth it? How do you find the best doctor? We get a fast education on how to read lab test results, what forms of alternative treatments to try, and even when to let yourself have a good cry versus when to just bite your lip and hold the tears back. I tried to make each decision based on thorough research, a bit of instinct, and “worse case scenario” situations.

So when I heard someone facetiously say, “You’re too young to have that illness” it felt like a slap in the face; as if they assumed I was too gullible to fight the doctor’s diagnosis and get “right one” that could be cured with a simple pill. I had to be incorrectly diagnosed, they assumed, because, after all, I “looked so good.”

lifedisruptedLaurie Edwards, a woman who grew up with a chronic illness as a child is the author of ‘Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,

In her book she explains, “However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who ‘should’ look and act healthy – fear, ignorance, intolerance, to name some.”

The ambush of advertising for prescription medicines has given the general public a small education on the fact that illnesses like rheumatoid arthritis and fibromyalgia are legitimate diseases. However, with this education, comes the feeling that everyone is an expert and their assumptions about various diseases are now based on what one sees in those same commercials.

For example, people with disabling illnesses can somehow be miraculously playing tennis or doing a marathon. While it’s true that a very small percentage of people may go into remission, or those just diagnosed may have favorable results, most of us are happy if we can get out of bed, get dressed and drive a car.

These commercials neglect to inform people that though an illness can be controlled somewhat, the person may still be in significant daily pain. With any chronic illness, most of which are invisible illnesses, there will be people who will be skeptical about how much your life is impacted by your condition.

When you cope with an illness while in your twenties or thirties, and you “look healthy” they will have even more hurdles to jump over to get the fact that for you to feel better requires more than an attitude adjustment or a daily walking regimen.

Get a free download of 200 Ways to Encourage a Chronically Ill Friend from “Beyond Casseroles” by Lisa Copen when you subscribe to HopeNotes ezine at Rest Ministries.  Lisa is the coordinator of  National Invisible Chronic Illness Awareness Week and host of Hope Endures Radio Podcast.