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 illness

Invisible Disabilities: Effective Tools Every Church Should Have


As presented at the Joni and Friends Disability Ministry Summit, 2007

With nearly one in two people having a chronic illness, it impacts most families; the invisibility of it, however, often inhibits the church from realizing its prevalence and how many people are suffering silently. It’s easy for hurt feelings to abound and for ill people to feel like a burden, not a blessing. Awareness and simple tools to increase your outreach to both members and non-members will make your church a shelter from life’s storms.

YOU WILL LEARN…

  • Why the church needs to know that half their audience on Sunday may look a lot better than how they feel. For example, 75% of marriages that include an illness end in divorce. Learn why illness ministry needs to be understood by all church staff and how to get their attention when they already have too much to do.
  • How to uncover the needs people with illness have if they don’t speak up until they’ve decided to leave the church. How to avoid hurt feelings and increase communication.
  • Practical ways to get your church body more enthusiastic about meeting the needs of church members who live with illness, how to approach your church about it, and set ministry priorities. How to teach them about the blessings the chronically ill will bring, not burdens.
  • How to respond when the church leadership says, “But he’s not a member… so we can’t help him.” Reaching beyond our church walls is vital because New Age religions do it very well and people in pain follow whoever shows them love.
  • How to create a welcoming environment for the chronically ill members and visitors in ten inexpensive, fast ways.

Appropriate for Christian audiences. 60 minutes, but can be adapted.

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Communicating with Your Spouse About Your Chronic Pain

This article is free to reprint. Keep everything “as is” and include the resource “box” at the end that refers back to Rest Ministries. Thank you! ~Lisa

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Communicating with Your Spouse About Your Chronic Pain

couple-cuddle“I feel like there are thumb tacks in my bed!” I say to my husband as he crawls into the other side of our bed. “I know there is nothing there, but I just feel bruised all over.”

“I’m sorry,” he offers with a sympathetic voice, but there is little else he can do.

“Actually, I sort of feel nauseous too,” I share. “It’s probably just the drugs. I wonder if I should eat something or if that would make it worse. I’m sure it will pass if I can just get to sleep.” I look over and he is already starting to snore.

For many of us, our spouse is our best friend. If our relationship is good, we want to share our feelings with them. Even if our relationship is hurting, we feel that by explaining our pain, our spouse may sympathize and be more loving toward us.

Although we don’t want to burden them by constantly sharing about our aches and pains, when we are hurting there is a desire to be heard and have our feelings validated. By talking out loud about what we are feeling, it somehow makes the pain real. It’s no longer “all in our head.”

Galatians 6:2 tells us “Carry each others burdens, and in this way you will fulfill the law of Christ.” At some point we must carry these burdens to the Lord, as well as a close friend, rather than just count on our spouse to carry the burden of listening about each ache.

Although your spouse may not be suffering from a physical ailment, there are still many losses that he is grieving. For example, it is an emotional thing to watch someone you love be in pain and not be able to fix it. He may be suffering as he watches you lose the ability to do things you love. He likely misses the couple outings you once took together when you could do physically active events, whether it was skiing, or just taking long walks together on the beach. He may be frustrated that even his hugs can cause you to wince. Counselors have found that there are three major areas where marriages suffer: money, time and physical intimacy.

Your marriage may be having difficulties in all three, specifically because of the role chronic illness has taken on within your marriage. Is it possible to “share our burdens” with our spouse without overburdening him and making him want to run the other way every time we open our mouth to share another symptom of our ailments?

Be a team with your spouse

It’s you and your spouse “up against” the illness. Although you may feel like your spouse is merely a spectator, intentionally make him a part of your team fighting the battle of pain, in whatever way he is most comfortable.

Ask your spouse if you can share some information about your illness so he has a better idea of what you are going through, but don’t overwhelm him. If he is willing to attend a few doctors appointments with you, let him, and give him time to ask the doctor his own questions. For example, giving him a brochure may be better than handing him a 250-page book. If he listens to podcasts, find some that would be beneficial for him to listen to. Acknowledge that there may be role or responsibility shifts in the marriage due to the illness. Be open about what you are struggling with and where you need help. For example, if you can no longer scrub that bathroom but, let him know before the grime gets out of hand.

Connie Kennemer lives with multiple sclerosis and she candidly shares that struggle that it can be to find the right balance and word. “I am not as mobile as I used to be and I often ask more of my husband such as ‘Can you work at home this afternoon?’ or ‘Why do you have to go to another meeting?’ How much should he accommodate me because my body is changing? He doesn’t always know when to stop and encourage me to try things myself. This is a constant challenge.”

Be reasonable in your expectations

We often marry someone who has our opposite personality style. If you need to read every article about your illness, but your spouse doesn’t, it may simply be because your spouse has a more laissez faire attitude, not because he doesn’t care. His response to a crisis may appear to be nonchalant on the outside, but it doesn’t mean he is not worried and concerned about you.

On the flip side, maybe you are emotionally overwhelmed the diagnosis and you need to just sit back and take it all in before you start doing research, while your spouse is spending hours at the computer finding out everything he can on the latest treatments, medications, and signing you up for the healing service at church. He may accuse you of being in denial about it all, since you aren’t showing as much passion as he is in finding out more about your illness. An excellent book recommend in helping you understand your communication styles better is “Men are Like Waffles, Women are Like Spaghetti” by Bill and Pam Farrell.

Have information about your illness available for when he is ready

If you are having a conversation and you want to explain more about how you are feeling, or details about the illness itself, you may want to have books with sticky notes on the pages you think he’s find most helpful. Or bookmark pages you can read together and then discuss. Connie says, “After ten years of living with MS, I am past the whiney stage, but Rex sometimes holds back; that’s when I need to ask him more questions about his feelings.”

Creatively keep him informed about the embarrassing parts of the illness

If your illness is going to cause you to be in the bathroom during eighty percent of the events you attend together, you need to let your spouse know that this is part of the disease. Health organizations have brochures on symptoms. You can say, “I’m dealing with some personal matters of this illness right now; I don’t really want to talk about them yet, but they’re in this brochure if you’re wondering.” Avoid sharing every detail if you can.

Look for other ways to vent besides always dumping on your spouse

“I realized that I held onto all of my frustrations of pain during the day and then ‘threw’ them at my husband as he came in the door,” shares Cheryl, who lives with chronic fatigue syndrome. “My actions set the tone for our entire evening and even though I felt better, he felt worse, and it lasted all night. He was beginning to dread coming home at night.”

Cheryl began to put aside the last two hours of her day to spend time writing in her journal, praying and doing something she enjoyed that calmed her. “Writing in my journal gave me the chance to express my frustrations, and then prayer really began to minimize the negativity too. My husband quickly noticed a difference and it’s made our relationship so much stronger.”

Find some ways to get involved in your community or a special hobby

What else do you have going on in your life, other than your illness? It’s easy to be overwhelmed with doctor’s appointments and just maintaining our illness, but it can result in a pretty dull life. Even if you have limited energy, do something you’ve always wanted to do that doesn’t have a deadline. Put together memory albums for your grandchildren, clean out just one drawer, find a new craft or hobby, volunteer to be on a prayer chain. Soon you will find that your illness actually is the last thing you want to talk about when you have had such more interesting events in your day.

Conclusion

So. . . How much is too much? It’s different for each person and each marriage relationship. Learn to look at your situation objectively. How many times are you bringing up your illness? How are you benefiting from talking about it more than necessary? Do you need understanding? Validation? Perhaps you need actual physical help with tasks. Ask yourself if talking about your illness could be a way of getting your spouse’s attention, and this seems to be the only thing he responds to? Regardless of whether it is attention, acknowledgment or understanding, how can you get this from God instead? How is it negatively affecting your life or those around you?

And then take a moment to really ask yourself “Is there a better, more creative way that I can create intimacy with my spouse, other than just complaining about each ache and pain? What activities can I still share that could help us grow closer together?”

And then when you want to share more about your pain or illness say a prayer first: “Lord, You know I don’t want to burden anyone else, especially when they cannot fix it. I really need a hug from you right now. I know that my spouse cares about me and wants to encourage me, even when he doesn’t always show it the way I want; please give me the wisdom to know when to ask for help and comfort from him/her and when to come only to You and ask you to fulfill all of my emotional needs.”

For more articles and important support while living with chronic illness or pain visit Rest Ministries so you don’t miss our fresh content and be entered for our monthly giveaway. Lisa Copen is the director of Rest Ministries, author of “Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend” and founder of National Invisible chronic illness Awareness Week.

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Share Your Mom Stories for My New Mom w/ Illness Book

mom-childAre you a Christian mom with a chronic illness who has kids under 10… or just remembers having kids under 10? If so, you may want to consider adding your input to my new book for chronically ill Chistian moms!

If you sign up for this “group” Christian Moms with Illness Book Team you will only be notified of what I am looking for for the book: example, anecdotes, advice, your stories, etc.

Your replies will not be public, and this is not a group where you will send emails to other members. It’s just a “tool” to be able to reach you and I will let you know if your suggestions make it into the book!

I am also looking for moms who also have the illness but may be the caregiver for someone else, moms with illness who have ill kids, single moms, etc. If you are an adult who grew with with a chronically ill mom, I also have some question for you!

If you are a mom and you have an illness you qualify.

Sign up here.

I look forward to working with you!
Lisa Copen

PS: Looking for mom support? Visit our Sunroom Groups:

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Call For Submissions: Invisible Illness Hosts Grand Rounds Blog Carnival

We are honored to be hosting Grand Round 8/18/09, the largest medical blog carnival online.

I am looking for any blog topics related to living with an invisible illness, treating invisible illnesses, having a family member with one, caregiving, etc. Posts can be casual from a patient perspective, or more formal from a medical professional background.

Details are here: http://invisibleillnessweek.com/?p=1811

Submit here:  http://tinyurl.com/nznvak

Deadline for carnival is 8/16, but we also have guest bloggers for our Invisible Illness Week web site. II Week is 9/14-20, 2009

If you can forward this on so we get some great submissions that would be so appreciated!

Lisa

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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!

ii2009logo-300pixels-low-resolution-animated-for-web

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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The “Times” Can Bring Fresh Awareness

Last winter I got into  a conversation with someone about what I believed 2009 would hold for illness ministry in the church. I predicted that pastors may become more aware of how many people live with chronic illness.

60505789.thb I thought this because:

  • Stress can make an illness be triggered or exasperated and so illnesses may actually increase or make  pain levels more  unbearable.
  • More families will seek counsel. The stress in relationships, finances, loss of jobs, etc. will bring more people who are willing to ask for assistance in their marriages or relationships.
  • More people may seek financial help who would not have before. When church’s asked why families or individuals had gotten themselves into these financial predicaments, a great deal of time it would come down to medical expenses.

I just read this quote in the Minstry Today newsletter and it was a good reminder as to the fact that:

(1) pastors are becoming more aware of just how many people are hurting;

(2) they really do care! Now may be an appropriate time to approach them about starting a HopeKeepers Group or perhaps having a table after church for Invisible Illness Week.

“It’s important for us [pastors] to be in touch with the people we are speaking to and speak in a way that is understandable and bring the relevant, powerful, life-transforming message of the Word of God to them. It’s just something I have interest in. I want to know what people are thinking, what they are facing, what they are grappling with. … One thing I’ve become very aware of in recent days is just how many suffering people there are out there, people that are hurting. It’s been said that if you preach to people who are suffering, you will never lack for an audience. There certainly is a large audience of people who are in pain today.” —Greg Laurie, pastor of Harvest Christian Fellowship

Your thoughts? Have you approached pastoral care recently at your church for one of the above reasons?

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Health 2.0 Why Twitter Can Help You Identify Causes of Pain

This article is free to reprint on your blog, ezine, web site, etc. Just leave everything “as is” including the resource box at the bottom. Thank you!

textingIf you live with chronic pain or a chronic illness you may have been requested by your physician to keep a diary of when you are feeling your best and worst. It may also be recommended that you write down your activities, your sleep patterns, and even your diet.

If you have attempted to take this on and do it thoroughly, you know that it can be an overwhelming feeling to keep track of all of your activities and still maintain a sense of normal life. It can be extremely helpful, however, to you and your medical team, to have a written record of your activities, diet, etc. to help discover what is it is causing you the greatest pain. Was that extreme flare caused by a minor food allergy, the weather conditions, or that you were up all night with friends?

It is ironic while those of us who live with chronic pain they find it challenging to write down what we are doing all of the time, what we are eating, and how we are medicating ourselves, millions of people are on the social network Twitter are recording what they ate for breakfast, the fact that they have a cold, or when they’re up working at 2:30 a.m. and on the computer. . . and they consider it fun!

Now is the time for those of us who have a chronic illness to let Twitter worked for us! This social networking tool has been used to help people with dieting, exercise, and even encouragement to stop smoking. But it may best benefit those of us with illness, who need to record enough of our life to figure out what is causing an increase in pain.

Here are 5 steps to use Twitter to understand the causes your pain:

[1] Create an account at Twitter just for your chronic pain logs. If you already have a Twitter account, make a new one, and let it remain private. If you look under “settings” you will see the option to make your account private, meaning that you will have to approve any followers before anyone can see your Twitter account. Since this is private medical information, we recommend not approving anyone. If you are already Twittering this can seem a bit strange because you typically want to increase the number of followers.

[2] You are now ready to start writing your posts. You cannot write more than 140 characters, however, this keeps it a simple task and not too overwhelming. Feel free to use it in any way necessary, for example, submitting more than one post to describe a special circumstance. You can send posts from your cell phone, not just from the computer, so set up this option in your account to make the most of it.

[3] If you are new to Twitter and don’t know where to start, it’s easy. Just post about anything you want in the box and click submit. You may want to began with events that are not part of your typical day and how your body has responded. For example, if you awoke with a lot of inflammation, you may ask yourself if the weather was unusual the night before? Did you stay out late with friends the day previously? Did you change your medication? What did you eat for dinner in the evening last night? Post any information that may be valuable to you or your medical team at any point in the future for your treatment.

[4] Before you go to a doctor’s appointment, log on to your Twitter account and print out the posts if your doctor would like acopy. Highlight any major changes in your patterns of pain.

[5] if you already use Twitter for personal or business use, consider using a service that can post a message to more than one Twitter account simultaneously. This way your regular tweets that include where you are or what you are doing are automatically posted to your pain diary that resides on Twitter as well.

The market for Twitter applications will continue to grow and there is no doubt that’s those considering medical Web 2.0 tools will come up with some fancy (and complicated) ways to record your pain levels. But for now you can have a thorough log of your chronic illness and pain levels in just minutes at no cost. You can’t beat that!

Lisa Copen is the founder of Invisible Chronic Illness Awareness Week held each year in Sept and featuring a free 5-day virtual conference w/ 20 seminars w/ 20 speakers. Follow Invisible Illness Week on Twitter for cool prizes and info. Blog about invisible illness on your site, be a featured guest blogger, meet others, read articles and lots more. Make a impact today!