Chronic illness Pain Support

8 Signs You May Not Need a Support Group For Your Illness

This article is free to reprint as long as nothing is changed. If you use it, I'd love to hear from you to say thanks!
Lisa

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8 Signs You May Not Need a Support Group For Your Illness
by Lisa Copen

When the diagnosis of an illness arrives, it's very common for everyone, including your doctor, to recommend a support group. Studies have shown that support groups are in fact very beneficial and can impact how well a person copes with his or her illness. However, it's not uncommon for people with illness to have no desire to attend a support group. Just as with any kind of group, there are some support groups you will connect with well and others that you will not. Don't conclude all support groups are the same; just because one doesn't seem like a refreshing place to be, doesn't mean there aren't any groups for you.

But the question still arises. Regardless of whether you are looking for a colon cancer support group or a endometriosis support group, the real question may be, do you really need a support group at this time in your life? Many changes occur while we live decades with illness and there are seasons in our life when an illness support group may hold our very best of friends, and other times when we have no need to attend whatsoever.

Here are eight signs that you may not need a support group right now:

1. You are managing your illness on a daily basis without any trouble. In fact, you are so busy with other things going on in your life, you don't really have time to analyze just how well you are coping with illness.

2. You have a trustworthy group of people who influence you in positive ways. Friends or family members appreciate the magnitude of the choice you make to live your best life possible, despite your daily pain.

3. You don't feel resentment, anger, or bitterness toward people who don't deal with chronic conditions. Your relationships with others aren't tainted by you comparing your abilities (or lack of) with others entering your thoughts.

4. You can easily carry on conversations without mentioning your illness. You don't feel it's such an integral part of who you are that you need to tell every stranger you meet about your disease.

5. You don't watch others with envy. You feel you have overcome any annoyances you may have previously felt toward people who have their health, but who do not seem to be appreciating it.

6. You have found that when you sit around at support group meetings talking about the highs and lows of living with illness, you rarely leave the meeting feel better. The support group you are in is more depressing than refreshing and talking about your illness doesn't seem to be helpful.

7. You feel confident in how you are able to be a good advocate for your health and illness. When more information about symptoms or tips about living with your illness are needed, you believe you are well prepared to do the research.

8. You have formed a friendship with at least one other person who has an illness. It's important for you to have someone with whom you can vent openly and share your vulnerabilities with in regard to how you live and cope with illness. And contributing your own ideas with another person who understands the details and "language" of illness will be helpful too.

If you could relate with all of the signs above, chances are that you don't need a support group at this time in your life. But guess what? You may be an excellent leader of an illness support group. All of the signs above that explain your coping skills, can be part of your outline to write a proposal for starting up a support group.

The most successful support groups are those led by people who have overcome the daily aggravations and animosities that occur during the first years of being diagnosed with a chronic illness. Since you have coped with the initial rollercoaster of emotions and have survived, a support group of people still struggling with them would benefit from your experience and expertise.

If leading a support group does not seem to be part of your calling, that's a typical reaction! Go enjoy other activities you feel passionate about. And don't forget that there are amazing people in support groups who will be there when you feel you need them.

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Instant download of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen when you subscribe to HopeNotes invisible illness ezine at Rest Ministries. Lisa is the founder of Invisible Illness Awareness

10 Tips to Having an Illness Support Group that Isn't Depressing

This article is free to reprint as long as nothing is changed. If you use it, I'd love to hear from you to say thanks!
Lisa

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10 Tips to Having an Illness Support Group that Isn't Depressing
By Lisa Copen

If you live with chronic pain or an illness, odds are that you have attended a support group at least once since you were diagnosed. Did it feel something like this?

Despite feeling exhausted and in pain, you decided you would attend the group anyways. By the time you got there you were running late, couldn't find the suite number, and finally just parked and hiked to an upstairs room in a dark wing of the hospital. You quietly found a seat, a hard, sticky seat. People smiled at you, but soon they got back to their discussion and it seemed no one was feeling encouraged by it. They argued over the side effects of medicine being worth the benefits, two people tried to convince you to buy a juicer from them, and soon you were ready to run screaming from the room. It's too depressing!

Aren't support groups supposed to be a valuable coping tool?

Yes! David Spiegel, MD, has proven in his studies that support groups improve the quality of life for the participants. While recent studies have shown that the patient may not live longer due to the support groups themselves [See the Sept. issue of CANCER, the journal of the American Cancer Society,] there is no denying that having your feelings validated by those who understand will help you sleep better at night. So here are some icebreaker games for small groups to perk up the people!

Whether you are looking for leadership program ideas for your small group, or you're just thinking about attending one, you may have cause for concern about how fast a group can go from being a friendly, honest place to a time of complaints and even bickering. Would you like some fresh icebreaker games for small groups to perk people up?

Here are 10 tips to help you make your chronic illness support group include some laughter as well as just the discussion of challenges. And these ideas will work for any groups, from a Dementia support groups in Dallas to an Ebsteins Anomaly support group. And these ideas are perfect to have when you are creating a proposal for starting up a support group.

1. Make faces on sticks. It may sound silly, but sometimes getting back to basics works best. Cut out smiley faces and sad faces and glue them on each side of a stick or plastic knife. As people take turns sharing about their week, make sure they can show both sides of the faces. For example, Kim may hold up the sad face while she says "getting ready for surgery and all the therapy afterwards has been stressful." (Then she can flip the face over to a smiley face) "But I've really appreciated how many family members has volunteered to help with childcare."

2. Rethink your concept of what counts as indoor games for small groups. For example, have everyone bring things for a JOY box and then have everyone choose something to take with them out of it at each meeting. It could be a rubber frog, a favorite poem, a note someone sent, an encouraging book, a silly or sentimental DVD. Have everyone return them by the next meeting to share again.

3. Let your small group write a silly theme as their next icebreaker. If anyone plays the guitar, have them help. You can pick a well known song. Write your own lyrics. Have fun with it and open or close each meeting with it. Comedian Anita Renfroe has a fun parenting song to get you brainstorming.

4. Bring some corny things to use during your meetings. Avoid making anyone feel pressured to use them. (If you force someone to wear a clown nose she may never come back) Have them available, however, and encourage goofiness before getting down to the real reasons you are there. Oriental Trading supply is the source of thousands of funny items guaranteed to spur a giggle.

5. Though it can be a challenge, don't let your group tune into a platform for any member to talk continuously about his or her disease, the treatments, alternative treatments and even complaints. If someone tends to dominate the conversation, let your group know you are implementing the use of a timer to make sure everyone has equal opportunity to share. Set whatever guidelines you wish, for instance, you could allow people to vent for sixty seconds on any topic. Or they could share about an alternative treatment they've found useful, but when the timer rings, time is up!

6. Have everyone bring something to put into a basket of encouragement for someone else. It may be someone who is having surgery from your group or a friend of someone in the group who has just been diagnosed. Brainstorm together about what items people would like, and be sure to remember sometimes the personal notes mean the most. If it's appropriate consider including family members.

7. Plan a fun evening for the group. If everyone wants a nice sit down restaurant, that's fine, but you have more fun at your local kid's pizza playing pinball. It can definitely be a successful icebreaker for small groups. A different environment may encourage some people to be vulnerable who have remained quiet previously.

8. Provide handouts or items that encourage people to thrive with illness. For example, National Invisible Chronic Illness Awareness Week always has fun items like bumper stickers, static clings, stickers, pins, mugs, etc. with the different themes like, "My illness is invisible but my hope shines through!"

9. When you schedule guest speakers, remind them that you want to provide the most positive outlook as possible, while still being practical. Invite them to pass out props, encouraging articles. Listen to your speakers before scheduling them. Some illness speakers are quite depressing.

10. The people in your group are quite amazing and able to make a difference. This is important for them to remember since they often feel so out of control. Your group may not be able to actually walk for charity, but they can likely work at a registration table, pass out bottles of water for a walk/run, or even just hand out presents to kids at the children's hospital. Teens with chronic illness often get support groups can be great motivators for these kinds of outings. Find a project people are passionate about where they can see they are making a difference in the lives of others.

Support groups can provide some of the most influential relationships that can help one live successfully with chronic illness. The environment of the group, however, can make or break its usefulness. With these few simple tips, your group can be a refuge and a place of true relaxation, creating an special group for people to create friendships that could just last as long as the illness, perhaps indefinitely.

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Find more ideas for your proposal for starting up a support group with your free download of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen. Just sign up for a weekly encouragement ezine, HopeNotes.

8 Secrets Why You Shouldn't Be Attending an Illness Support Group

This article is free to reprint as long as nothing is changed. If you use it, I'd love to hear from you to say thanks!
Lisa

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8 Secrets Why You
Shouldn't Be Attending
an Illness Support Group

By Lisa Copen

When you first received the diagnosis of your illness, the odds are that many people around you, perhaps even your doctor, reommended a support group. Reseach has studied the impact support groups have on how well one copes with disease, and it is positive. However, if you have no desire to attend a support group, recognize that it is not uncommon. As with any kind of support group, some support groups you will connect with well and others won't be a good fit. Don't jump to the conclusion that all support groups are the same.

But do you really need a support group right now? Whether you are looking for a amyloidosis support group or a diabetes online support group, just as there are many changes that happen to our bodies while living with chronic illness, there are seasons in our life when a support group may be our lifeline and other times when we feel we simply don't have the need.

Below are eight tips to help you decide if a support group is something you may not even need right now:

1. You are coping well with the day-to-day aspects of living with illness. You don't think about your illness non-stop because you're simply too busy living life.

2. You have a solid group of people who are a good influence. Friends or family members are supportive in your efforts to live your best life possible despite having an illness.

3. You don't experience feelings of anger, bitterness or resentment towards healthy people -- at least on a regular basis. You can have relationships with people with comparison of your abilities (or lack of) ever entering your thoughts.

4. You easily carry on conversations with people without ever bringing up the topic of your illness. You don't believe that your illness is such a fundamental part of who you are that it's necessary to describe your medical challenges to total strangers.

5. You don't watch others with envy. You feel you have overcome any annoyances you may have previously felt toward people who have their health, but who do not seem to be appreciating it.

6. You have found that when you sit around at support group meetings talking about the highs and lows of living with illness, you rarely leave the meeting feel better. The support group you are in is more depressing than refreshing and talking about your illness doesn't seem to be helpful.

7. You are able to be a good advocate for your well-being. When you need information on symptoms or tips about living with your illness, you are equipped to find the information.

8. You have at least one friend who lives with illness that you feel you can talk freely with about what you may be experiencing. You have the opportunity to vent or share ideas with someone who understands your "language" of illness.

If some of the examples above sounded like a description of where you are at with support groups, it's likely you don't really need a support group right now in order to live emotionally healthy with a chronic illness. However, you may be surprised to find that you could be an excellent leader of an illness support group. All of the statements above can be an easy way to create a proposal for starting up a support group.

The most thriving support groups are those which are led by people who have conquered the daily exasperation and bitterness that arise during the first years of a diagnosis. Since you have dealt with all of the emotional ups and downs, a support group of individuals still feeling under attack would benefit from your knowledge and understanding.

If you feel leading a support group is not your calling then go enjoy other things you are passionate about. Remember, there are friends in wonderful support groups who will be there when you need them.

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Get a free download of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen when you subscribe to HopeNotes invisible illness ezine at Rest Ministries. Lisa is the coordinator of Invisible Illness Awareness

5 Ways to Surrender Frustrations of Living with Invisible Illness

This article is free to reprint as long as nothing is changed. If you use it, I'd love to hear from you to say thanks!
Lisa

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5 Ways to Surrender
Frustrations of Living
with Invisible Illness

By Lisa Copen

"But you look fine. Are you sure you're as feeling as bad as you say?" "You haven't really experienced chronic fatigue until you've tried to raise three children on your own!" "I think it you just got out of the house more and didn't think about it so much, it may just heal itself." "If you were serious about trying to get well, you'd at least try those vitamins I recommended. It never hurts to try."

And the remarks go on. . . and on.

And it hurts.

You may be surprised to hear that nearly 1 in 2 Americans has a chronic illness or physical condition that affects their daily life. The range of diseases and included everything from back pain to fibromyalgia, arthritis to cancer, and migraines to diabetes. Oftentimes, one of the largest emotional stumbling blocks for people who suffer from illness is the invisibility of the pain. About 96% of illness is invisible. This means that the person who suffers from the chronic condition show no outward signs of physical pain or disability, nor does he or she use an assistive device like a walker or wheelchair. But the incredible pain each day can be disabling within the confines of the home.

If you have an invisible illness here are 5 tools to help let go of some of the frustrations:

[1] Let go of expectations. This may be a life-long process, but you will consistently find that people will always disappoint you, as no one is perfect-including you! Remember, you don't understand the difficulties that your friends are going through, whether it's a divorce, the death of a loved one, a loss job, an ill child, etc. Your illness is significant in your life. Even when people care, they still will have significant things going on in their own lives.

[2] Find supportive friends. If there is someone who is constantly belittling you or doubting your illness and he is beyond listening, let go of that friendship or distant yourself from that relative. Illness has a way of helping prioritize friendships and spend our limited energies with those that mean the most to us.

[3] Search for blessings in your life. Make a commitment to stop dwelling on how badly you feel, and instead search for ways to bring more joy into your life, even if it's just appreciating the small things. What are you doing when you feel natural adrenaline kick in and give you extra energy? Most likely, that's where your passions are! Bring more of these into your life. And don't let your limitations stop you. For example, if you once loved to garden, now you could grow a few potted flowers or hire a neighborhood teenager to plant some vegetables and set up an automatic sprinkler system. If you want to aim high, consider starting a garden consulting business.

[4] Use your aptitude and talent for things you have a personal interest in. Too often we feel like the skills we learned in the workplace are no longer valuable. Perhaps you've always wanted to write children's books or be a business consultant. Get involved in your community and do some volunteer or part-time work to continue to grow professionally. Rather than focusing on what others aren't doing to comfort you, follow your dreams and give that gift of comfort to yourself.

[5] Encourage someone else. You personally know how hard it is to live with illness and to feel like no one understands. So take time to be vulnerable with someone else who is going through this. Whether you meet someone through an online group such as National Invisible Chronic Illness Awareness Week's message boards, or through your local support group, volunteer your time and expertise (yes, you're an expert on living with invisible illness!) and use it to make someone else's journey easier and you'll find your own is more enjoyable too. Are you frustrated that no one at your church thinks your invisible illness is real? Rather than stop going to church, find ways to educate them, such as a column in the church newsletter or brochures about National Invisible Chronic Illness Awareness Week. These say what to say/not to say to a chronically ill person.

None of us have the capability to force another person to change, or to make them care. But we can educate them and give gentle advice. We must also continue to work on ourselves, however, because you will find that even when you want to change it can be a real challenge. It requires discipline and motivation for a better life. You owe it to yourself to find joy despite your illness, and by focusing on how you can change your circumstances, instead of change other people, you'll be much more rewarded.

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Instant download of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen when you <a href="http://www.restministries.org/res-ezine_ill.htm">signup for HopeNotes</a> invisible illness ezine at Rest Ministries. Lisa is the coordinator of <a href="http://www.invisibleillness.com">Invisible Illness Awareness</a>

20 Ways Your Church Can Minister to the Chronically Ill in 20 Minutes or Less

This article is free to reprint. Please do not make changes, and we love to hear where it will be reprinted so we can say thanks!

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Rest Ministries, the largest Christian organization that serves the chronically ill, recently did a poll, asking "List some of the programs or resources a church could offer to make it more inviting comfortable" Below is a sampling of the 800+ responses.

1. Encouragement emails.

2. Make an effort to confirm that the handicapped stalls in the restroom are functioning and clean.

3. Add padded chairs or cushions to make church easier to sit through. Room for wheelchairs is always a need and don't forget to include extra places for family members.

4. An open attitude for a support group like HopeKeepers. It would make me feel very special that there was an understanding of needs that are not always visible.

5. More disabled parking, even if they are temporary spots.

6. An awareness on the part of the ushers that those arriving late may have difficulty walking or getting out of cars.

7. Ask volunteers to call people with chronic illness just to check on them when they don't make it to services.

8. When suppers are given, recognize that I may need help getting my meal--or at least understand that I won't be able to wait in a long line.

9. Be cautious when giving people big hugs. It can topple over or hurt the person.

10. Video tape of the service for DVD, don't just do a live web cast. My computer doesn't work that well.

11. Check out the church doors. Can someone with an illness open them with ease?  If not, install a mechanical button to push them open.

12. Stop telling me that if I truly believed and had faith I'd be healed by now. Please don't go on and on about how good I look even though I know for a fact that I look terrible and miserable that day.

13. Offer me ways to serve within the church that can be performed regularly, but not on a set schedule. I still want to contribute, but I need some flexibility so that I can do a job when I feel well enough to do so.

14. Make the sermon notes available to download and print out so I can listen later or even just review what I didn't catch the first time.

15. Acknowledge National Invisible Chronic Illness Awareness Week. A selection of books on the topic in the church bookstore would be nice. Rest Ministries has a top 100 list of Christian books for the chronically ill for some ideas.

16. Just talk about chronic illness! Mention it in sermons as one of the challenges many people face just like unemployment.

17. Have Christian volunteers from church that will clean house for small fee.  Some have offered to clean my house, but I cannot accept charity yet, but neither can I afford to pay a regular house cleaning service.

18. Help even a fraction with the cost of encouraging books and resources for the church library for the chronically ill.

19. Remember all of the caregivers in the church--not just caregivers of parents, but spouses and ill children as well.

20. Have copies of sermon for free on CD or computer.

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Get a free list of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen, just signup for to HopeNotes invisible illness ezine at Rest Ministries. Lisa founded of Invisible Illness Week

Illness and Anger: 3 Steps to Avoid the Spiritual Pitfalls

This article is free to reprint, just post as it's written and include the footer at the bottom. I'd love to hear if you do share it with others! Lisa

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Illness and Anger: 3 Steps to Avoid the Spiritual Pitfalls

"When I was first diagnosed with chronic fatigue syndrome, I was relieved at first," shares Cindy.  "So many doctors kept telling me to see a psychiatrist, but I knew it was my body, not my head, that was in trouble."  She explains, "I had spent so much time before my diagnosis being mad, having my illness finally validated was a great feeling.  But six months later, the anger set in the pain management of the illness seemed to barely exist."

Elizabeth Kubler-Ross, a doctor in Switzerland, wrote a life-changing book called, "On Death and Dying" which describes the cycle of emotional stages that is often referred to as the grief cycle. Anger is the third stage, following the shock stage and the denial stage.

When we discover that we have a chronic illness, meaning an illness we will likely have for the rest of our lives, anger is a natural reaction.  So many hopes and dreams seem to be taken from us.

Recognizing these feelings and dealing with them is part of the mourning process. We all need to go through this process, and it comes at different times for each individual and at different levels at each stage of the illness. Ironically, the first year of diagnosis may even be easier than the third year.

Says Krista, who lives with chronic fatigue syndrome, "I know that my anger stages come and go. I have been angry at doctors, at God, myself, my church, even my husband and daughter and other family members."

One thing is definite: anger will come.  For some people it will be a mild irritation with everything in life, and for others a flaring temper that doesn't seem subside.

"It is my observation," says Linda Noble Topf, author of "You are Not Your Illness", "that the absence of anger in the face of a serious illness suggests that we have already withdrawn from life, that we have relinquished our passion for living, that we are resigned and emotionally numb."

When you are Christian it can feel shameful to even express that you have angry feelings.  Too often Christians believe that their angry emotions are sinful and something that those with a great deal of faith never experience.  They even believe that those feelings they do have are not even quote "allowed."  Have you ever experience some of these feelings?

- If I truly have faith in God and trust that He knows best, than I shouldn't get angry about my circumstances. Doesn't anger signify a lack of faith?

- If I reveal to other Christians that I am angry about my situation, won't they think I am weak in my walk with God?

- I know the Bible says, "wise men shouldn't anger."  So how can be my real self with the Lord?

- I know that anger leads to bitterness. So if I don't acknowledge these feelings I will be a "better Christian" and I won't ever become bitter about life.

None of these feelings are unusual, yet they keep us from dealing with the grief that we are going through because of our loss of health and lifestyle.

Here are a few tips to guide you in dealing with anger.

1. Are you angry?  Acknowledge your authentic feelings and then get on with life.

If you insist on ignoring your emotions, believing that in the end you will be a spiritually healthier person for it, you are wrong. Topf advises, "Think of anger as a resource that you can learn to harness and refine for your own benefit." If you can learn to recognize your anger, it will help you reclaim your authentic identity.  Faking it won't take you through this.

In the Bible the story of Job shows how he became angry at the events in his life (including the outbreak of sores all over his body). He even cursed the day he was born. As Job's life went on, God bless him with even more material assets, family, and choice.  Job told God, "Surely I spoke of things I did not understand, things too wonderful to know" (Job 42:3b).  Through his anger and frustration, he eventually found wisdom and character. You can't fake it through life or you will never benefit from this challenge you've been given

2. It is all right to have angry feelings.

God designed us to feel a wide variety of emotions and one of these is anger.  There are numerous instances in the Bible where Scripture specifically tells us about how even God got mad.  What does the Bible tells about how to cope with our own angry feelings?

- "For man's anger does not bring about the righteous life that God desires" (James 1:20).

- "Wise men turn away anger" (Proverbs

- "A fool gives full vent to his anger, but a wise man keeps himself under control" (Proverbs 29:11).

God knows that although anger is a natural human emotion, it should not be our lifestyle. Some people may argue that it takes anger to get things accomplished. One example of this is the emotional name of Mothers against Drunk Drivers which have a seemingly appropriate acronym called "MADD." "We discover that anger is first and foremost demand for change," writes Topf. Great things have happened in our history, because of the "I'm-not-going-to-take-it anymore-attitude," but it's not how God calls us to live our entire life.

In Amos 1:11, God says, "I will not turn back my wrath... because his anger raged continually."  God isn't upset because of the presence of anger, but because the anger was continuous. God calls us to put our focus on Him and try to make a difference that will bring glory to Him.

3. Walk alongside God and He will walk with you through the anger.

The Bible tells us how David discovered this.  "Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the anger of my foes, with your right hand you save me." (Psalm 138:7). God can calm the anger of not only ourselves but also our enemies.  He's there to offer protection and guidance as you go through the various episodes of anger and the emotions of your illness.

"I'm still dealing with anger toward this illness, after two years diagnosed, and eight years of being sick," shares Peggy, who lives with fibromyalgia. "Each time a new realization hits me about my limitations, I experience anger. And yet, I know that God has a plan for my life that is perfect. I still battle the angry feelings, which rage inside, every time I have to say no to something I would like to do. I pray and expect His perfect grace and that He will become slow to anger, counting on the scripture, 'The Lord is compassionate and gracious, slow to anger, abounding in love'" (Psalm 103:8).

We will all face the emotion of anger for the rest of our lives. Some of the most basic advice to cope with it is that which is in a scripture that I refer in my book, "Why Can't I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why" where I walk through the emotions of anger and bitterness we deal with in regards to our illness.  In Hosea 7:13b-14 God says, "I long to redeem [you] but. . .  [you] do not cry out to Me from [your] hearts, but wait upon [your] beds." Don't flop down on your bed and wail "Why me?" Instead pour out your heart to the Lord and wholly ask Him for help.

"Why Can't I Make People Understand?" is author, Lisa's newest book that will get you through your emotions of anger at www.whycantimakepeopleunderstand.com  . Get a free download of 200 Ways to Encourage a Chronically Ill Friend from when you sign up for HopeNotes at Rest Ministries. Lisa is the founder of Invisible Illness Week.

An Email for Moms with Illness to Send to Their Girlfriends

Can't Keep up With Other moms? No problem!

I just had an article posted over at the How to Cope with Pain Blog at  http://www.howtocopewithpain.org/blog/195/playgroup-mom-chronic-illness-chronically-ill

It's called "8 Ways To Encourage Your Fellow Playgroup-Moms Who Have Chronic Illness." Since most people who will read it there are the actual mom with the illness and not the friend, I wrote an example email that could accompany the article and/or link in case people want to send it to their friends but don't want to sound like they are telling them what to do.

I thought I would post it here to share too! Hope it’s a help for you!

To receive notification of other articles like this that are free to reprint, just sign up for my blog at http://www.restmin.typepad.com

You can have them come to you via email.

Bless you,

Lisa

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Hi, gals!

Hope you all are doing well. I just read this article on a blog that I read called, "How to Cope with Pain." As most of you know I live with (your illness here.) I know sometimes I am not able to be quite as spontaneous as I'd like to be an I've missed a few play dates because I'm not feeling well. I don't want my illness to be a big deal or get any special attention, but I just love you all so much, I also don't want you to ever think I am using my illness as an excuse to not do something. For me, it's just a part of life. Not always fun, but I'm hanging in there.

Anyway, I saw this article called "8 Ways To Encourage Your Fellow Playgroup-Moms Who Have Chronic Illness" and thought it was great at explaining some of the things I experience. Please don't feel like you have to change your schedule or accommodate the whole group to meet my needs, but I thought it might explain why some days when you say, "Let's just walk to the park" I look at you like "You've got to be joking, right?"

Plus, I figure within our circle you probably know a lot of other people who also live with illness. I was surprised to hear that about 1 in 2 people in the US live with some kind of chronic illness or chronic pain. (There is actually an Invisible Illness Week in September that has theses statistics on their web site. Who would have thought?)

So I'm thinking this may be helpful if you have a sister or other friend or someone who lives with illness. Feel free to forward the article on.

Thanks again for being so special to me! Our play dates help me keep my sanity!"

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http://www.howtocopewithpain.org/blog/195/playgroup-mom-chronic-illness-chronically-ill

8 Ways To Encourage Your Fellow Playgroup-Moms Who Have Chronic Illness

February 6th, 2008

This is a guest article by Lisa Copen, the founder of Rest Ministries, which serves the chronically ill. She’s written a previous guest article here - one of my favorites - about gifts for those with chronic illness. I invited her to share some suggestions for moms with us today - I hope you enjoy Lisa’s wonderful article.

Mom-and-kid moments come in all forms - days at the beach, backyard BBQs, or kids’ reading groups at the library. These are all wonderful times to get to know other mothers and share in wearing out your kids, as well as to gain some understanding from other parents. But the number of women who live with chronic illnesses such as fibromyalgia (FM) and diabetes continues to grow, and the spontaneity of these fun activities is easily disrupted.

How many moms does this issue effect?

The National Fibromyalgia Association estimates that about 10 million Americans (and nearly 5 percent of the worldwide population) deal with symptoms associated with FM, one of the fastest growing auto-immune diseases in the US. When I recently went to an adoptive moms’ playgroup, 3 out of the 6 women had a chronic illness, just within this niche group. Both being aware of what a friend can and can’t do, and also acknowledging that some days will have different limitations and challenges, can make a significant impact in these moms’ ability to participate and feel comfortable with other mothers.

1. Ask what time of day is best for play-dates and activities

For someone with a chronic illness, timing will vary from season to season (weather can impact it a lot), and also from one illness to another. For some moms, mornings are good and afternoons are exhausting; for others it’s the other way around. Heat, combined with illness, can make it impossible for a chronically-ill mom to even be outside for long.

2. Be adaptable and don’t make her feel guilty if she must cancel plans

When you live with a chronic illness, you never know what may change moment to moment. For example, last week I just took a normal step, but it resulted in my knee being locked up for 4 days. Despite medication and therapies, all my plans had to be cancelled, and my husband tried to pick up the pieces of my son’s schedule while working from home.

3. Ask her to clarify what she’s comfortable doing

For example, you might say, “How far do you want to walk today?” and try to accommodate. Even though you can see the park from your house two blocks away, she may not be able to make it. Stairs may be impossible, so take the elevator with her. Walk at her pace, recognizing that she may have to take rest stops every few minutes, even though you’ve only walked 50 feet. Do her a huge favor and chase after her kids for a few minutes. Standing for longer than a couple minutes may also be a challenge. Despite the pain of walking, it’s better for me than standing. Even though the line at the carousel looks like it’s only five minutes, she may need you to offer to stand in line, and then let her jump in beside you at the last minute.

4. Be polite when asking questions about her illness

For example, ask, “What’s your greatest challenge?” Don’t tell her about all the cures you’ve heard for her illness, about the products you sell that could cure her, or about your mother’s aunt’s neighbor who has the same illness but still is able to raise five children and work a full-time job.

5. Remember that simple things may be difficult for her

For example, if you go to the beach, ask her if she would like to be dropped off while you find a parking spot. Many people can’t plop down on the ground, so bring a few lawn chairs, so she isn’t the only one 2 feet above everyone else. Sun and heat can bother her so she’ll need to find shade. Don’t expect her to carry 3 lawn chairs, a cooler and your 14-month old daughter, even though you can carry all that and the dog. You don’t want to make her feel helpless, and she doesn’t want a fuss, but be aware that she may need a few extra considerations.

6. Don’t presume that she can watch your children

Even if it’s only for 5 minutes, don’t assume she can unless she volunteers. Taking care of kids is exhausting, and caring for her own may be draining the little strength she had left. Plus, if your kids run out into the street, keep in mind that she may not physically be able to sprint after them as fast as you could.

7. Plan activities that she can be a part of

While you may love your stroller exercise group and mommy-and-me gym class, these may not be possible for her. Find out what types of things she likes to do and then ask if you can join her for these. Keep the activities under 2 or 3 hours - even though you may typically go to the zoo for 6 hours, understand that she may need to leave earlier than you. Don’t say, “A little more walking may do you some good!”

8. Lastly, offer genuine encouragement

Say the words to her that every mom wants to hear: “You’re an amazing mom, and I don’t know how you do it all. I truly admire your perseverance and strength.”

Lisa Copen is the founder of Rest Ministries, which serves the chronically ill. Get a free download to the first 40 pages of her book Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend, when you sign up for HopeNotes Invisible Illness ezine at Rest Ministries website at <a href="http://www.restministries.org/res-ezine_ill.htm">http://www.restministries.org/res-ezine_ill.htm</a>. Lisa is also the founder of Invisible Illness Awareness Week at the Invisible Illness website.

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Thanks so much to Lisa for being empathic enough to offer these wonderful suggestions!

Other articles you might like to read (see link of article above to get these links)

12+ Gift Ideas for Gals with Chronic Illness

Help Your Family and Friends Cope with Your Pain Disorder

505 Ways to Help Someone Who’s Chronically Ill (my review of Lisa’s great book)

Are You Pain-Free? 10 Things Those of Us in Pain Would Like You to Know

6 Things Churches Can Do To Really Help the Chronically Ill

This article can be reprinted for free. Just keep the footer and do not make changes without permission. Thanks!
Lisa

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6 Things Churches Can Do To Really Help the Chronically Ill

by Lisa Copen

1 in 3 people in the U.S. have a chronic condition. If it's
not you, it's someone sitting next to you or a friend who
has yet to reveal her greatest personal struggle.

Oftentimes a chronic illness, such as chronic fatigue
syndrome, or chronic pain like migraines or back pain, is
undetectable to those around them. It may surprise you to
know that, according to the U.S. Census Bureau,
approximately 96% of the people who have an illness do not
use an assistive device, like a cane or a wheelchair. Pain
is nearly always invisible. Those that are ill usually do
everything that they can to get to church. They want to be
part of the church community and they appear to be healthy.
Still, just sitting through the service can be extremely
difficult.

As someone who lives with rheumatoid arthritis, I remember
standing during worship and grasping onto the pew in front
of me to balance. My knees both need joint replacements and
my feet are somewhat deformed. And then the worship team
began singing a song that had the lyrics, "I will stand in
spite of pain." I rolled my eyes and my husband said, "It's
just an expression." Of course, I knew this, but the timing
was ironic.

Even as I was surrounded by people in a church I loved, I
still felt as though no one understood what I was going
through-physically or emotionally.

It's obvious that churches already have an overwhelming
amount of needs that must be fulfilled. Some of these needs
are obvious and they often rise to the top of the priority
list. So when people don't even verbalize about their pain
level or illness symptoms that change their lifestyle, it's
hard to understand where a church could begin to help.
Pastors ask, "If they aren't speaking up, then doesn't that
mean they are coping with it fine? They believe in God and
we have a healing service every six months. Isn't that
enough?"

Let's look at some staggering statistics:

- We usually assume the chronically ill are the elderly, but
60% of people who live with illness or daily chronic pain
are between the ages of 18 and64. - 75% of marriages where
one of the spouses have a chronic illness end in divorce -
When you are chronically ill, depression is 15-20% higher
than it is for the average person - Many studies have found
that physical illness or uncontrollable physical pain are
major factors in up to 70% of suicides.*

Whether the need is obvious or not, we should be concerned
because our churches are filled with many people who are
living with chronic pain. And when chronic pain exists,
broken spirits are also there. People are hurting silently
and need help and encouragement. These are the
broken-hearted that Jesus says he will give comfort.

But the question is, if people aren't talking about their
pain, how do you know how to reach out to them? How can you
understand their needs?

(1) First, do a survey in your church to find out what some
of the needs are that people may not be talking out loud
about. This is particularly important if you are in a large
church; this is because a recent Barna group study
discovered that larger churches were the least likely to
mention congregational care ministries as a priority (Church
Priorities for 2005 Vary Considerably). When people don't
feel a personal connection to the church staff or others,
they are less likely to share their vulnerabilities. Too
frequently, they are given a list of healing scriptures and
sent on their way.

Ask, "If a van was provided, would you be able to get to
church more easily? Would you listen to church on the
internet if you were too ill to attend? Do you feel you can
call and ask for occasional personal assistance (especially
if the illness is chronic and not acute)? Do you know who to
call? Would you like the worship song lyrics in the bulletin
and not just on an overhead? Are the seats comfortable or
would you prefer a few rows be saved for you with cushions?"
Brainstorm with a group of people who have a chronic illness
and ask them for a wish list. Then sit down and prioritize.

(2) Organize a care group, similar to other small groups
your church has, for the chronically ill. For example, Rest
Ministries, the largest Christian organization for those who
live with chronic illness, has a small group program,
HopeKeepers. They have a great selection of resource
materials, Bible studies and support for group leaders. A
group like this can be a turning point for people who really
need the hands on support and understanding. Talking and
praying about one's illness week after week in a regular
small group can feel like you are a burden to others. But
having a small group environment that is a "safe place"
where everyone "speaks the same language" and even laughs at
the same silly stories can be refreshing. The group doesn't
need to be large. Even just having the chance to hand out
with one other person can be life-changing. Be a church that
recognizes the struggles of chronic illness and provide an
oasis for people.

(3) Have special guest speakers encourage your church body.
There are dozens of people who have physical disabilities
that go to churches and share their testimony about what God
has done in their life. Allowing them to be at the pulpit
and share what God has done in their lives, despite physical
challenges and set backs, sends a message to those that are
ill that you recognize their needs, you care, and most of
all, that you believe they are still worthy to be used by
God. People such as Dave Dravecky, Renee Bondi, Joni
Eareckson Tada, and many others, minister to the masses, not
just those with disabilities.

(4) Consider adding a parish nurse to your staff, especially
if your church body has a lot of seniors. According to the
Marquette University College of Nursing, the number of
parish nurses in United States is estimated to be about
6000. Many retired nurses are finding this area of ministry
appealing and parish nurse certification can be found at
most hospitals. The parish nurse position description can
include anything from going to homes to monitor diabetes or
high blood pressure of church members to organizing health
fairs, screenings, and walking groups. The role of the
parish nurse may cover the needs of your illness and
disability ministries, depending on the demographics of your
church. A parish nurse would also work closely with the
congregational care pastor.

(5) Be a clearinghouse of helpful resources for the ill that
are available for borrowing. Many people with chronic
illness are on a fixed-income and yet they are trying to
find encouragement. Stock your church library with books on
living with chronic illness such as "Why Can't I Make People
Understand?" or "Beyond Casseroles: 505 Ways to Encourage a
Chronically Ill Friend," by Lisa Copen or the exceptional
book on suffering, "When God Weeps" by Joni Eareckson Tada.
Buy a few subscriptions to magazines such as "HopeKeepers",
"Guideposts" and even "Arthritis Today." Remember to have
books on tape, audio presentations and large-print materials
whenever they are available. Post flyers or have brochures
available about chronic illness or disability ministries,
such as Joni's "Wheels for the World" program or Rest
Ministries' annual outreach, "National Invisible Chronic
Illness Awareness Week." A volunteer could collect materials
of local and national ministry resources for a binder; items
could include lists of local resources and national
ministries and put them in binder; lists of organizations,
magazines and newsletters on topics for Christian seniors,
those with disabilities, caregivers, and assisted living to
name a few.

(6) Lastly, and most importantly, remember people with
illness want to serve. Not just be served. This is because
"He who refreshes others will himself be refreshed"
(Proverbs 11:25). For example, when a woman tells you she is
resigning from working in the nursery, let her know that she
is welcome to serve in other ways when she is ready. She may
find she enjoys writing encouragement notes to people who
have an illness. A man may find he can mentor another man
with a chronic illness one-on-one rather than leading a
Bible study. Let them know that you value wounded healers
and believe that God comforts us "so that we can comfort
those in any trouble with the comfort we ourselves have
received from God" (2 Corinthians 1:4).

About twice a month someone tells me that they went to their
pastor with a request to start a chronic illness HopeKeepers
ministry and they were told, "Come back when you are healed
and then we will talk. You can't very well minister to
others with illness when you aren't even healed yourself."
The broken hearts that arise from these comments is
unbearable. It's devastating to feel like God is using your
illness for His glory and then be told you are no longer
useful to the church-or even to God-until you are healed.

In the parable Jesus shares in Luke 14:21, a man asks his
friends to come to a great banquet he has prepared. But his
friends turn him down. Upset with their lack of graciousness
he orders, "Go out quickly into the streets and alleys of
the town and bring in the poor, the crippled, the blind and
the lame." This is still a directive to us today. Too few of
our churches have recognized the needs of the chronically
ill in their own church, much less their community. We must
focus on providing a place where we offer unconditional
hospitality. We need to "go out" into our own pews and ask
the chronically ill to help us provide a place of refuge.
And then these people will become the comforters, who, with
the support of their church, will be able to go out into the
community and offer to walk alongside the hurting with
understanding.

Get a free list of 200 Ways to Encourage a Chronically Ill
Friend from "Beyond Casseroles" by Lisa Copen when you <a
href="http://www.restministries.org/res-ezine_ill.htm">signup
for to HopeNotes</a> invisible illness ezine at Rest
Ministries. Lisa is the founder of <a
href="http://www.invisibleillness.com">Invisible Illness
Week</a>

6 Tools for the Chronically Ill to Making Sensible Resolutions

6 Tools for the Chronically Ill to Making Sensible Resolutions
Lisa Copen

Did you recently make resolutions for the New Year?

- I'm really going to start an exercise program

- I'm going to lose those extra pounds

- No more bad habits!

- I won't be so sensitive

- I'll save more money

Most of us have at least reflected on a list of aspirations to accomplish but then March 23rd rolls around and we feel like a failure. Some of the goals we haven't done a single thing about but feel guilty.

The concept of setting resolutions is worthy and helpful for most people. When you are chronically ill, however, resolutions can be wearisome and even scary. Most of the time our bodies and our health, therefore our lives, are out of our control. The effects of chronic pain can be devastating I you dwell on it. Though losing five pounds a month seems reasonable, a prescription of medication can quickly add on the pounds, despite our best dieting efforts. Even small goals seem hopeless.

The rationale behind why we don't meet our goals is very reasonable.

--> I'm going to exercise more . . . And then I have surgery and my illness is exasperated. Even my doctor said to take it easy and not overdo right now.

--> I'm going to lose some weight . . . But a simple trip over a curb turns into a broken bone and then the doctor puts you on steroids. Soon you just want to maintain your weight and not gain even more.

--> I'm going to stop spending so much money . . . And then one emergency room visit sets you back two-thousand dollars

So what is the answer?

First of all, congratulate yourself if you ignored that calendar that flashed "January" beckoning you to set resolutions. January is be a time to recover from the holidays, the travel, or the family that may have visited. There is no universal rule that says all goals must begin in January. You're likely exhausted. December is often a time to finish up as many medical visits as possible before the new year's health insurance deductibles set in. The weather conditions can leave you home-bound for weeks. And if you've survived it all without getting the flu, a cold, or infection, you're one of few. Could there be a worse time to make major modifications in our life?

Secondly, make some changes without labeling anything a "resolution." When you go to grab snacks at the store, get items with high fiber, soy, sugar-free, organic, or even those that have immune boosts. Check with a dietician about what some healthy choices would be, taking your illness into consideration. Little changes will eventually add up, and you can have the pleasure of knowing you are working towards your objective.

Thirdly, make a list of things that are important to you. Rather than saying, "I'm going to make wiser choices about money." Write down what it is that you desire. Have you wanted to go see a local Broadway show for years, but have never been able to afford the $50 ticket? Is your car running on bolts and old tires? How much would you need to fix it or replace it? Surely you value the freedom having your own transportation gives you. By taking some time to write down what is important to you, and stick them on the bathroom mirror as a reminder, it will give you some motivation when you are making those small little choices each day.

Fourthly, team up with a friend who is also ill, to encourage one another in your practical goals. Stress and illness is not a good combination and any change in our life (good or bad) dramatically intensifies the strain. It's not helpful to have a healthy friend say, "Well, maybe if you cut back on your calories more it would help. I noticed you had two bowls of soup at lunch today." (Did she even notice that you completely resisted the temptation of the basket of bread? And it had free refills!) Symptoms of illness are very unpredictable and a friend who understands what you are experiencing is an amazing gift. You will be able to keep a better perspective on your goals when a true friend says, "It's so depressing when you lose the weight and then the medications make you blow back up overnight. But hang in there. It won't last forever."

Fifth, give yourself a break. Depression and chronic pain go together way too often. When you make a decision that is less than ideal, don't sweat it! Don't think of it as a failure, but rather just a less than perfect choice you made for that moment. You will have another sixty-something times in the next month to make the correct decision. Start out by just aiming for making the correct one more than half the time. Skipping that shopping spree or avoiding the drive-thru burger place is a step in the right direction.

Lastly, assign yourself a goal that is fun! We forget that not everything in our lives needs fixed. Sometimes we just need more joy. Mark your calendar for lunch with a friend every two weeks as a new habit. Surround yourself with people who are inspirational and who overcome the odds in their lives with enthusiasm. And don't forget to reward yourself too. If you clean out your closet, working towards an ambition to get more organized, go buy a new chic hat that isn't typically you.

If you have supportive friends and down-to-earth expectations, by the end of the year you will find that you are one of the few people who actually met some of those "resolutions." And everyone has some of their goals that are left for next year's calendar! So celebrate the fact that you have found some joy along the journey of reaching towards some new habits, despite living with illness.

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Get a free list of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen, just subscribe to HopeNotes invisible illness ezine at Rest Ministries. Lisa is the founder of Invisible IllnessWeek

When Your Wife is Ill and Romance Ain't Happening

Looking for some fresh content? One of the ways I have helped spread the word about Rest Ministries is to write a number of articles, all of which are available to reprint for free. You can use these anywhere, such as your blog, newsletter (for church or support group, or whatever...), ezine, web site or more. Thank you for helping us by freely using the articles. Just add the footer at the end!

Blessings,

When Your Wife is Ill and Romance Ain't Happening

by Lisa Copen

When your wife has a chronic illness, though you may love her no matter what, it can be hard for her to get into a romantic mood. Physical pain from the actual illness to weight gain or loss, bloating, and less-than-fun symptoms of medication can all be a deterrent to some romantic moments.

It's important to know that you are not alone. Nearly 1 in 2 people live with a chronic illness in the U.S. which means that a lot of marriages are disrupted by this uninvited third party of illness, often including mental illness as well. Sadly, seventy-five percent of them end in divorce.

Is it possible for you to make a difference and let her know you want to romance her? Of course! With a few simple ideas, you can get the spark back into your marriage.

Buy her food that she can eat without guilt--even if you have to hunt it down. Did you know chocolate contains phenyl ethylamine, a chemical that produces the feeling of "being in love"? Look at your pharmacy for Russell Stover's sugar free chocolate. Starbuck's just introduced a heavenly new drink, a sugar-free Cinnamon Dolce'. Now that's romantic!

Hold her hand. Yes, I know. You're hoping for more than just holding hands. But if it takes a woman without an illness awhile to get in the mood, you can imagine the affection she needs in order to forget her physical pain. Rub her back carefully, use an endearing name you haven't used in five years, and don't pressure her for more. Snuggle, cuddle, snuggle as if you will never let her go.

Talk to her about how much you admire her and how she copes with the daily-ness of living with a chronic illness. Remind her that you're never going anywhere and you feel blessed to be married to someone who shows so much strength in character when her body is weak.

Buy her something she wouldn't buy herself like a $20 bottle of lotion, a CD she's mentioned or a rocking chair for the patio. What is something that she could enjoy when she isn't feeling well? Pamper her.

Schedule a day of rest for her. Get the kids out of the house, give her a new pair of pjs, and let her know she has he day to do whatever she wants.

Hide romantic notes in places she will find them. Stick a note in the fridge that says, "I know it's hard for you to go grocery shopping. Please know how much it means to me that you keep this box stocked just for me!"

Being romantic at home isn't hard. Purchase a fondue pot and tell her that you will bring home something to dip every Wednesday night so you two can sit and have a conversation over candlelight (and cheese, chocolate, marshmallow, etc.)

Are you having troubles starting up some romantic conversations? Buy a book about conversation starters or fill a jar with topics. Do a search online for "romantic conversation starters."

Take the time to create the atmosphere. The new flameless candles that operate on a battery are great for a romantic environment. Make up a play list on your ipod that will take her back to simpler days. Bring a big bouquet of roses into the bedroom when she isn't looking.

It's no surprise that women are complicated beings and rarely can you read her mind to know exactly what she needs and when she needs it. So be sure to just ask her outright. "What is on your mind most these days? How can I help you around the house more? What can I do to communicate just how much I love you?"

The good news is that perfection is not a requirement. Just by making the effort to increase the romance in the relationship will score you some big points. And she may not let you even have a chance to finish reading that book on romancing your wife, because if she sees you reading it, your willingness to read it may be all the romance she needs. One last piece of advice, doing the dishes or the laundry really can be the best way to your wife's heart.

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Get an instant download of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen when you subscribe to HopeNotes invisible illness ezine at Rest Ministries. Lisa is the coordinator of National Invisible Chronic Illness Awareness Week and founder of Rest Ministries, Inc.