Chronic illness Pain Support

ARTICLE: 5 Ways to Create Clear Positive Thoughts to Help Relieve Pain

This article is free to reprint if it is left "as is" and the footer at the bottom is included.  You can find more articles like this to share in your newsletter or blog here.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

5 Ways to Create Clear Positive Thoughts to Help Relieve Pain

by Lisa Copen

If chronic pain has got you down, it's understandable but not an emotional state you need to live in forever. With just a few little changes in your life today you can form clear positive thoughts to help relieve pain.

1) Stop off at the pet store before coming home from the doctor's office just to watch the animals. Twenty minute smiling through the glass at the puppies, kittens or even the little hamsters spinning on their wheels, can give you a better outlook on life. Research has proven that pets have a special place in our emotional well-being, decreasing our stress, improving our health, and even assisting us in healing from surgeries even faster. There are many reasons that pet facilitated therapy health care has become so widely accepted. It's been proven that pet owners with chronic and terminal illness actually are healthier people.

2) When was the last time you heard a song that was your favorite back in high school? Start putting together a collection of your favorite songs. The new ipod shuffle recently dropped in price to just $50 and it holds about 250 songs. This little device is around the size of a cracker, yet it can increase your energy level exponentially. Research has found that listening to music for just twenty minutes a day can decrease one's level of pain. Researchers have also found the beneficial effects of music listening on healing in children. So start putting together a list of the songs you eventually will want to download and ask people to give you itunes cards as gifts. Son you will have a wide variety of songs that will inspire you, spur childhood memories, provide energy, hope, and maybe even a desire to get up and dance, even if you just dance around the kitchen floor with a broom.

3) Join some kids for video games. Results of study from Wheeling Jesuit University discovered that video games actually have the ability to distract someone's attention from pain, even children. An organization called Games for Health was recently been formed to build relationships between researchers, medical professionals, and game developers. Here they can share information about how video games will impact technologies even health care and policy. Don't be surprised if your physical therapist has you playing ten minutes of a Wii game like bowling or tennis.

4) Buy a coloring book and splurge on a big box of crayons. If you don't have children, odds are it's been years since you have felt the thrill of a freshly sharpened crayon in your hand. And you are no longer limited to coloring books you can find at your local store. Just about any topic online has coloring pages from American civil war coloring book pictures to wedding coloring books and leprechaun coloring books. And if your family needs a fund reminder, print out a handwashing coloring book.

5) Bring some fresh flowers inside the house. Take a hint from royalty and place them in each room, even a bud in a small vase in your bathroom. Fresh flowers blended with fruit and musk can give your kitchen a lift as well as your mood when you are in there. Can't find any flowers in your yard? What about a weed? A yellow dandelion can still provide you with reprieve from panic, "burnout," depression, and extreme fatigue.

Coping with chronic pain is possibly one of the most taxing trials most people will deal with in their lifetime. But with just a few changes you can relieve a bit of the pain level and regenerate your joy. Despite not being able to have control over you illness, you can influence your atmosphere. Make it a cheerful one.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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 founder of Invisible Illness Awareness

 

ARTICLE: 5 Ways to Create Clear Positive Thoughts to Help Relieve Pain

This article is free to reprint if it is left "as is" and the footer at the bottom is included.  You can find more articles like this to share in your newsletter or blog here.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

5 Ways to Create Clear Positive Thoughts to Help Relieve Pain

by Lisa Copen

If chronic pain has got you down, it's understandable but not an emotional state you need to live in forever. With just a few little changes in your life today you can form clear positive thoughts to help relieve pain.

1) Stop off at the pet store before coming home from the doctor's office just to watch the animals. Twenty minute smiling through the glass at the puppies, kittens or even the little hamsters spinning on their wheels, can give you a better outlook on life. Research has proven that pets have a special place in our emotional well-being, decreasing our stress, improving our health, and even assisting us in healing from surgeries even faster. There are many reasons that pet facilitated therapy health care has become so widely accepted. It's been proven that pet owners with chronic and terminal illness actually are healthier people.

2) When was the last time you heard a song that was your favorite back in high school? Start putting together a collection of your favorite songs. The new ipod shuffle recently dropped in price to just $50 and it holds about 250 songs. This little device is around the size of a cracker, yet it can increase your energy level exponentially. Research has found that listening to music for just twenty minutes a day can decrease one's level of pain. Researchers have also found the beneficial effects of music listening on healing in children. So start putting together a list of the songs you eventually will want to download and ask people to give you itunes cards as gifts. Son you will have a wide variety of songs that will inspire you, spur childhood memories, provide energy, hope, and maybe even a desire to get up and dance, even if you just dance around the kitchen floor with a broom.

3) Join some kids for video games. Results of study from Wheeling Jesuit University discovered that video games actually have the ability to distract someone's attention from pain, even children. An organization called Games for Health was recently been formed to build relationships between researchers, medical professionals, and game developers. Here they can share information about how video games will impact technologies even health care and policy. Don't be surprised if your physical therapist has you playing ten minutes of a Wii game like bowling or tennis.

4) Buy a coloring book and splurge on a big box of crayons. If you don't have children, odds are it's been years since you have felt the thrill of a freshly sharpened crayon in your hand. And you are no longer limited to coloring books you can find at your local store. Just about any topic online has coloring pages from American civil war coloring book pictures to wedding coloring books and leprechaun coloring books. And if your family needs a fund reminder, print out a handwashing coloring book.

5) Bring some fresh flowers inside the house. Take a hint from royalty and place them in each room, even a bud in a small vase in your bathroom. Fresh flowers blended with fruit and musk can give your kitchen a lift as well as your mood when you are in there. Can't find any flowers in your yard? What about a weed? A yellow dandelion can still provide you with reprieve from panic, "burnout," depression, and extreme fatigue.

Coping with chronic pain is possibly one of the most taxing trials most people will deal with in their lifetime. But with just a few changes you can relieve a bit of the pain level and regenerate your joy. Despite not being able to have control over you illness, you can influence your atmosphere. Make it a cheerful one.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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 founder of Invisible Illness Awareness

 

ARTICLE: Planning a Women's Retreat so Those with Chronic Illness Can Come

This article is free to reprint if it is left "as is" and the footer at the bottom is included.  You can find more articles like this to share in your newsletter or blog here.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 Planning a Women's Retreat so Those with Chronic Illness Can Come

by Lisa Copen

Nearly 1 in 2 people in the USA have a chronic illness and about 96% of it invisible. Are these women attending your church retreats? Many of them are suffering silently, depressed, isolated, and feeling very alone. Others are some of the wisest, calming, most spiritually beautiful women who will touch attendees at your retreat in ways no planned speaker can. But are any of them coming?

Rest Ministries, the largest Christian organization that serves the chronically ill, took a survey about attending retreats. Out of the twenty respondents, seventeen participate less since they have a chronic illness. When asked why, the responses were as follows:

Three reported, "Accessibility issues (I know I can't easily get to and from different buildings at the retreat)"; 6 people said, "The pain factor. It's just too draining"; 4 responded, "The unpredictable health issues"; and 10 explained that it was, "A combination of the above."

So, how could you encourage these women to get involved again in your church retreat?

1. When planning the retreat ask a lot of questions about the retreat center and promote that you have this information before people register

For example, are the hills steep?  Are there "golf carts" available?  Exactly how far are the rooms from the main building?  Is electricity in the rooms?  Are only bunk beds available?  Are there chairs other than just metal folding chairs?  Elevators?  One women explains, "I stopped going a year or so ago because the retreat planner does not tell you what is expected, or about walking, stairs, etc. They need to be more honest." People with illness look for retreat centers held in locations where there is little walking involved and preferably the ground is flat.  Large homes or hotels are also good.  It's easy for a retreat director to assume that fifty yards is a "short walking distance."  But fifty steps may be the limit for some people.  So provide actual distances on your promotional flyers, not just "rooms are within a short walking distance."

2. Realize that women with illness have a great desire to go on retreats and get to know others, but they also will be on their own schedule at times. Don't take it personally.

Margaret, who lives with a malignant brain tumor and uterine cancer says, "I don't attend because people don't want to understand or accept that sometimes I have to retreat from the 'retreat.'  I may have to go to my room to get some rest. Others decide that I'm escaping from my problems, and they demand that I participate in whatever is happening. I'm not wishing to be anti-social and I will participate when God enables me to do so. But when God tells me to rest, I must rest, despite what the [retreat] 'timetable' states." A schedule of the retreat's events a week before can be extremely helpful, even if it's just posted on your church's web site.

3. When planning events such as ice breakers or fun games, remember to have something for those with physical limitations to participate in if they wish

You may ask those with chronic illness what their preference would be.  Many are happy just to cheer on their team, rather than participate in the actual race where everyone dresses up in costumes.  Debbie, who lives with chronic fatigue syndrome shares, "Unfortunately, I have not been able to find any retreat planners who understand that I am unable to participate, not because I'm uncooperative, shy, or antisocial, but rather because I cannot physically do so; the result is that I do not attend church retreats any longer."

4. Avoid gasping when you see how much stuff she has packed

All women may have necessities that they pack to make their weekend more comfortable.  But for those with chronic illness this may also include: different forms of bedding, cushions for chairs, special pillows, dozens of snacks, pain patches, shades to sleep, and a flashlight and a book to read if they can't sleep. They may bring special water, the biggest pill box of medication you've ever seen (don't comment), and maybe even a service dog (which she should have spoken to you about in advance).

5. Remember that she knows her body better than you do, and she is trying to plan for the best experience

She realizes that riding a bus to the retreat center may throw her back out the whole weekend, so if she can go in a car with a staff member that modification is very beneficial. If she wears ear plugs or listens to music, don't take it personally. She may need to save her strength to socialize that evening. If she is diabetic, she may be eating small meals or snacks throughout the day. Don't comment, "Oh, we're going to be eating in thirty minutes, so why don't you just wait."

6. Take her requests in stride without thinking she is being a prima donna

She isn't asking for the bottom bunk and bringing her bedding because she is the Princess and the Pea. She may have some required needs. For example, electricity is a medical requirement, not a wish, for women who use a CCAP machine for sleep apnea (2 women out of our responses of 20 use one). Refrigeration of medications may also be necessary, so don't tell her to just find an ice pack for her room. Her medication could be ruined so she may need access to a staff member who can get into the kitchen. Sheryl, who has chronic myofascial pain reminds us, "Make sure there are always chairs available for those who can't stand more than a couple of minutes." Don't assume just because you don't see a cane, means she is fine.

7. Realize that she may not want others to know about her illness

Anjuli, who has congenital myopathy (a form of Muscular Dystrophy) says, "Don't single me out!" and Marjorie agrees. "When an explanation is given in confidence, don't respond so much that everyone knows that I have a problem."

8. Have scholarships available

Most people with illness are on a very limited budget. These women, however, are often too proud to ask for financial assistance for something they consider "frivolous"--which it is compared to paying for their monthly medication. Let them know scholarships are available.

9. Assign a person in charge of overseeing the necessities of those with chronic illness

Choose your "healthiest" person with a chronic illness, or a cancer survivor, to communicate with those with illness and listen to their needs and concerns. The women who responded to the survey still do attend retreats and most say they approach the retreat planner ahead of time about their health issues. But for the dozens of others who would like to attend, but assume you are unable to accommodate their needs, they never contact the church. Try to reach the women who assume they are unable to go, by putting a special line on your promotional flyers that say, "Coping with chronic illness? Ask us about our special accommodations! We'd love to have you come!"

One of the most valuable gifts in our church that we often overlook is the wisdom and joy of those who live with chronic illness and oftentimes daily pain, and love God anyways.  September 8-14 is National Invisible Chronic Illness Awareness Week, sponsored by Rest Ministries. It's a perfect opportunity to take a second look at your ministry's priorities and discover who is not being served who could use your encouragement. And don't forget to also include the chronically ill because the church is missing out on their joy in the Lord, despite their suffering. Get them involved in a retreat soon! One of them may just be your next speaker.

>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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 founder of Invisible Illness Awareness

 

ARTICLE: Planning a Women's Retreat so Those with Chronic Illness Can Come

This article is free to reprint if it is left "as is" and the footer at the bottom is included.  You can find more articles like this to share in your newsletter or blog here.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

 Planning a Women's Retreat so Those with Chronic Illness Can Come

by Lisa Copen

Nearly 1 in 2 people in the USA have a chronic illness and about 96% of it invisible. Are these women attending your church retreats? Many of them are suffering silently, depressed, isolated, and feeling very alone. Others are some of the wisest, calming, most spiritually beautiful women who will touch attendees at your retreat in ways no planned speaker can. But are any of them coming?

Rest Ministries, the largest Christian organization that serves the chronically ill, took a survey about attending retreats. Out of the twenty respondents, seventeen participate less since they have a chronic illness. When asked why, the responses were as follows:

Three reported, "Accessibility issues (I know I can't easily get to and from different buildings at the retreat)"; 6 people said, "The pain factor. It's just too draining"; 4 responded, "The unpredictable health issues"; and 10 explained that it was, "A combination of the above."

So, how could you encourage these women to get involved again in your church retreat?

1. When planning the retreat ask a lot of questions about the retreat center and promote that you have this information before people register

For example, are the hills steep?  Are there "golf carts" available?  Exactly how far are the rooms from the main building?  Is electricity in the rooms?  Are only bunk beds available?  Are there chairs other than just metal folding chairs?  Elevators?  One women explains, "I stopped going a year or so ago because the retreat planner does not tell you what is expected, or about walking, stairs, etc. They need to be more honest." People with illness look for retreat centers held in locations where there is little walking involved and preferably the ground is flat.  Large homes or hotels are also good.  It's easy for a retreat director to assume that fifty yards is a "short walking distance."  But fifty steps may be the limit for some people.  So provide actual distances on your promotional flyers, not just "rooms are within a short walking distance."

2. Realize that women with illness have a great desire to go on retreats and get to know others, but they also will be on their own schedule at times. Don't take it personally.

Margaret, who lives with a malignant brain tumor and uterine cancer says, "I don't attend because people don't want to understand or accept that sometimes I have to retreat from the 'retreat.'  I may have to go to my room to get some rest. Others decide that I'm escaping from my problems, and they demand that I participate in whatever is happening. I'm not wishing to be anti-social and I will participate when God enables me to do so. But when God tells me to rest, I must rest, despite what the [retreat] 'timetable' states." A schedule of the retreat's events a week before can be extremely helpful, even if it's just posted on your church's web site.

3. When planning events such as ice breakers or fun games, remember to have something for those with physical limitations to participate in if they wish

You may ask those with chronic illness what their preference would be.  Many are happy just to cheer on their team, rather than participate in the actual race where everyone dresses up in costumes.  Debbie, who lives with chronic fatigue syndrome shares, "Unfortunately, I have not been able to find any retreat planners who understand that I am unable to participate, not because I'm uncooperative, shy, or antisocial, but rather because I cannot physically do so; the result is that I do not attend church retreats any longer."

4. Avoid gasping when you see how much stuff she has packed

All women may have necessities that they pack to make their weekend more comfortable.  But for those with chronic illness this may also include: different forms of bedding, cushions for chairs, special pillows, dozens of snacks, pain patches, shades to sleep, and a flashlight and a book to read if they can't sleep. They may bring special water, the biggest pill box of medication you've ever seen (don't comment), and maybe even a service dog (which she should have spoken to you about in advance).

5. Remember that she knows her body better than you do, and she is trying to plan for the best experience

She realizes that riding a bus to the retreat center may throw her back out the whole weekend, so if she can go in a car with a staff member that modification is very beneficial. If she wears ear plugs or listens to music, don't take it personally. She may need to save her strength to socialize that evening. If she is diabetic, she may be eating small meals or snacks throughout the day. Don't comment, "Oh, we're going to be eating in thirty minutes, so why don't you just wait."

6. Take her requests in stride without thinking she is being a prima donna

She isn't asking for the bottom bunk and bringing her bedding because she is the Princess and the Pea. She may have some required needs. For example, electricity is a medical requirement, not a wish, for women who use a CCAP machine for sleep apnea (2 women out of our responses of 20 use one). Refrigeration of medications may also be necessary, so don't tell her to just find an ice pack for her room. Her medication could be ruined so she may need access to a staff member who can get into the kitchen. Sheryl, who has chronic myofascial pain reminds us, "Make sure there are always chairs available for those who can't stand more than a couple of minutes." Don't assume just because you don't see a cane, means she is fine.

7. Realize that she may not want others to know about her illness

Anjuli, who has congenital myopathy (a form of Muscular Dystrophy) says, "Don't single me out!" and Marjorie agrees. "When an explanation is given in confidence, don't respond so much that everyone knows that I have a problem."

8. Have scholarships available

Most people with illness are on a very limited budget. These women, however, are often too proud to ask for financial assistance for something they consider "frivolous"--which it is compared to paying for their monthly medication. Let them know scholarships are available.

9. Assign a person in charge of overseeing the necessities of those with chronic illness

Choose your "healthiest" person with a chronic illness, or a cancer survivor, to communicate with those with illness and listen to their needs and concerns. The women who responded to the survey still do attend retreats and most say they approach the retreat planner ahead of time about their health issues. But for the dozens of others who would like to attend, but assume you are unable to accommodate their needs, they never contact the church. Try to reach the women who assume they are unable to go, by putting a special line on your promotional flyers that say, "Coping with chronic illness? Ask us about our special accommodations! We'd love to have you come!"

One of the most valuable gifts in our church that we often overlook is the wisdom and joy of those who live with chronic illness and oftentimes daily pain, and love God anyways.  September 8-14 is National Invisible Chronic Illness Awareness Week, sponsored by Rest Ministries. It's a perfect opportunity to take a second look at your ministry's priorities and discover who is not being served who could use your encouragement. And don't forget to also include the chronically ill because the church is missing out on their joy in the Lord, despite their suffering. Get them involved in a retreat soon! One of them may just be your next speaker.

>~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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 founder of Invisible Illness Awareness

 

ARTICLE: Invisible Illness and Friends Who Don't Get It: What to Do

This article is free to reprint if it is left "as is" and the footer at the bottom is included.  You can find more articles like this to share in your newsletter or blog here.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Invisible Illness and Friends Who Don't Get It: What to Do

by Lisa Copen

If you have an invisible chronic illness you may discover that the invisibility factor of the illness can be much more of a challenge than the physical changes your body is undergoing. Most people who are diagnosed with an illness sooner or later accept the illness as being a part of life. In order to have a life filled with joy, one must educate one's self on the illness and that treatment options available, and then make choices.

Making those we care about accept it, or even acknowledge it, is out of our control. The skepticism of others about our illness may last a lifetime and cause deep wounds; our relationships and even our own self-worth suffer.

So, what you do when someone important in your life refuses to acknowledge the seriousness of your disease, or accept that the disease even exists? Here are four steps to change your actions and attitudes:

1. Go with it. Don't take yourself and your predicament too seriously when you're around the person. Understand that there is no magical discussion you can have that will make him change his mind. The odds are, the only way he will change his mind is by simply observing you and noticing your invisible illness as it begins to show some visible side effects. Your limitations, such as walking a long-distance, may become obvious without you having to explain it.

2. Grow with it. Use this as an opportunity to reflect on how you perceive other people and what you assume about their abilities. For example, when you're standing in line at the store and feeling wiped out, it is easy to assume "No one else knows how hard this is for me!" Surprisingly, nearly 1 in two people live with an illness and about 96% of the painful diseases are invisible. So the odds are that there are people who do actually understand how you feel. Also, think about what situations your friends are experiencing that you don't really understand. Is a friend suffering from a spouse who has had an affair? Do they have a parent who has Alzheimer's? Or have they recently lost a job? All of these events dramatically change one's life and your friends can use your empathy and understanding.

3. Get over it. You may find yourself thinking "No one understands!" so frequently that you are missing out on new friendships. Save yourself the grief and don't obsess over how much people sympathize or if they do it appropriately. Though we would all like a loved one to be able to experience what it would be like to slip inside our skin for twenty-four hours, it's never going to happen. If people around you feel like they can never please you, soon you won't have any relationships left. You cannot change how someone else thinks; you only have control over your own behavior. So make sure your conversations are full of grace.

4. Get on with it. Life is precious and short and no material things in your life can replace friends and family. It is true that the intimacy level in your relationship will not ever be high if your illness is not at least believed to exist. But if you still want a relationship, and it's a healthy one in other ways, it can happen.

The odds are that in time your friend will eventually have his own health crisis, and have some level of understanding about what you have faced on a daily basis. He may even turn to you for advice. Be supportive and encouraging. Don't say "I told you so."

Go with it. Grow with it. Get over it. Get on with it.

Relationships with those who don't understand the seriousness of your illness can exist. Be positive, accepting him for what he's able to give to the relationship, and have reasonable expectations. Someday, this may prove to be one of your most special friendships.

Get a free 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">subscribe to HopeNotes</a> invisible illness ezine at Rest Ministries. Lisa founded <a href="http://www.invisibleillness.com">Invisible Illness Week</a>

ARTICLE: Invisible Illness and Friends Who Don't Get It: What to Do

This article is free to reprint if it is left "as is" and the footer at the bottom is included.  You can find more articles like this to share in your newsletter or blog here.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Invisible Illness and Friends Who Don't Get It: What to Do

by Lisa Copen

If you have an invisible chronic illness you may discover that the invisibility factor of the illness can be much more of a challenge than the physical changes your body is undergoing. Most people who are diagnosed with an illness sooner or later accept the illness as being a part of life. In order to have a life filled with joy, one must educate one's self on the illness and that treatment options available, and then make choices.

Making those we care about accept it, or even acknowledge it, is out of our control. The skepticism of others about our illness may last a lifetime and cause deep wounds; our relationships and even our own self-worth suffer.

So, what you do when someone important in your life refuses to acknowledge the seriousness of your disease, or accept that the disease even exists? Here are four steps to change your actions and attitudes:

1. Go with it. Don't take yourself and your predicament too seriously when you're around the person. Understand that there is no magical discussion you can have that will make him change his mind. The odds are, the only way he will change his mind is by simply observing you and noticing your invisible illness as it begins to show some visible side effects. Your limitations, such as walking a long-distance, may become obvious without you having to explain it.

2. Grow with it. Use this as an opportunity to reflect on how you perceive other people and what you assume about their abilities. For example, when you're standing in line at the store and feeling wiped out, it is easy to assume "No one else knows how hard this is for me!" Surprisingly, nearly 1 in two people live with an illness and about 96% of the painful diseases are invisible. So the odds are that there are people who do actually understand how you feel. Also, think about what situations your friends are experiencing that you don't really understand. Is a friend suffering from a spouse who has had an affair? Do they have a parent who has Alzheimer's? Or have they recently lost a job? All of these events dramatically change one's life and your friends can use your empathy and understanding.

3. Get over it. You may find yourself thinking "No one understands!" so frequently that you are missing out on new friendships. Save yourself the grief and don't obsess over how much people sympathize or if they do it appropriately. Though we would all like a loved one to be able to experience what it would be like to slip inside our skin for twenty-four hours, it's never going to happen. If people around you feel like they can never please you, soon you won't have any relationships left. You cannot change how someone else thinks; you only have control over your own behavior. So make sure your conversations are full of grace.

4. Get on with it. Life is precious and short and no material things in your life can replace friends and family. It is true that the intimacy level in your relationship will not ever be high if your illness is not at least believed to exist. But if you still want a relationship, and it's a healthy one in other ways, it can happen.

The odds are that in time your friend will eventually have his own health crisis, and have some level of understanding about what you have faced on a daily basis. He may even turn to you for advice. Be supportive and encouraging. Don't say "I told you so."

Go with it. Grow with it. Get over it. Get on with it.

Relationships with those who don't understand the seriousness of your illness can exist. Be positive, accepting him for what he's able to give to the relationship, and have reasonable expectations. Someday, this may prove to be one of your most special friendships.

Get a free 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">subscribe to HopeNotes</a> invisible illness ezine at Rest Ministries. Lisa founded <a href="http://www.invisibleillness.com">Invisible Illness Week</a>

4 Challenges to Expect When Leading an Illness Support Group

 

This article is free to reprint - just keep it "as is."

4 Challenges to Expect When Leading an Illness Support Group

 

This article is free to reprint - just keep it "as is."

--------------------

 

4 Challenges to Expect When Leading an Illness Support Group

 

By Lisa Copen

 

After weeks, or even months, of planning for your support group, the time for your first meeting has finally arrived. You have prepared a proposal to start up a support group which has been approved by an organization or church. You have gathered items for a welcome package and have topic or speakers ready to go.

 

So, you're meeting is sure to run perfectly, Right? Unfortunately, all the plans in the world cannot cancel out a few unforeseen situations. Below are four of the aggravations you may experience during those first few meetings. Knowing what hurdles you may encounter can help you be prepared in advance.

 

(1) Only a couple of people come.

 

How it feels: Disappointing. After all the work you put into it, not to mention the passion you feel about doing this, it seems like such a wasted to just have one or two people show up. Understand that this can be typical, especially at first, when everyone feels a bit intimidated. Try not to take it personally. To be honest, you are fighting an uphill battle in getting people to attend a chronic illness support group, because when people feel ill, they usually want to stay home, not go out and socialist. But when they are feeling well, they'd prefer to do something more fun then sit around and talk about their illness.

 

What to do: A good motto to remember is, "Hope for the best and prepare for the few." The founder of HopeKeepers, which is a Christian support group program for the chronically ill, agrees. "It can be such a disappointment when you feel God leading you to start a group and then only one person shows up. But from personal experience I can say that God knows what He is doing and may have planned it that way! The first time I had only one woman come to a HopeKeepers meeting, we ended up having an amazing conversation. Later she disclosed that she was extremely leery about attending and probably wouldn't have spoken at all if other people had been there."

 

Also, keep an outline of your lesson, and even include what kinds of topics people shared. This way you can easily "repeat" the meeting with little preparation as a follow up. You may want to call people and, without pressuring them, ask if there is anything that you can do to make it easier for them to attend. Do they need a ride? What is typically a good time of day for a meeting?

 

(2) Your lesson plan is completely ignored.

 

How it feels: As though your ideas aren't interesting or inspiring enough to keep their attention. It can also feel as though no one appreciates all of the time you spent in preparation.

 

What to do: Allocate more than usual flexibility in your timeline at first and then add in more structure as the group meets and you begin to see how it flows. It's most likely that people are so excited to meet one another who understand what they experience living with daily chronic pain, that they just want to talk. You've provided a forum where the floodgates of pent up emotions are sure to spill over as soon as they realize they are allowed to be honest and vulnerable. It's impossible to hold up a book and point people back toward your lesson plan when one of the members is sobbing over her daughter who has told her mom her illness is "all in your head" and until she gets over it they are done. This type of situation can occur at any meeting, but it may be more frequent during the first month.

 

Talk to your group about your desire to allow people to share, but also that you want everyone to leave feeling refreshed. So regardless of what happens during the meeting, you will plan to end with an uplifting article, scripture, poem, prayer, devotional, etc.

 

(3) Everyone complains about relationships, the medical professionals, their illness-everything.

 

How it feels: Sometimes, like you are surviving a small mutiny. You will find many emotions that have not been expressed until now. People have deep wounds about things people have said to them or how they've treated them; unjust consequences due to their illness; perhaps even medical errors. It may feel like they want you to fix the chaos or else they will talk incessantly about it until you do.

 

What to do: Write up some guidelines, before your first meeting if possible, and include the "venting guidelines." Read "10 Ways to Make Your Illness Support Group Uplifting." One practical tool is to set a timer and allow everyone to have 60 seconds to share their most frustrating experience of the week. Brainstorm about a contest your group could have that would bring some humor to the venting. For example, the person who handled their irksome situation the best or most creatively could win the "Aggravated the Alligator (a rubber alligator) Award" to take home for the week.

 

Group members should have a sense of freedom in sharing their concerns and annoyances, but be sure to include others in the conversation. If Jane can't seem to let go of a situation, add, "Jane, I know some of us can identify with what you are sharing. Can someone else tell us how she or he has dealt with the emotions that accompany a situation that was similar?" If you are doing a study you can say, "Since we want to have plenty of time at the end to share something uplifting, let's move on to question five. Jane, would it be okay if people could offer their encouragement after the meeting or maybe later this week with a phone call or email?"

 

(4) One person continually dominates the conversation; she takes over the meetings and completely disregards your plans or people who are trying to talk.

 

How it feels: Infuriating! After all your preparation it can be annoying to have someone override your entire meeting and take the group down a path that lacks the encouragement you want to provide. You justifiably could be concerned about her impact on the group and how many people she could scare away.

 

What to do: Set boundaries at the beginning. It's important that people in the group are allowed to share their frustrations, but they also need to respect the others in the group. They must watch their language, the amount of time they dominate a conversation, and how they talk about other people's treatments or decisions.

 

One of the best ways to approach this is to include guidelines about how the group will function that are given to all new members. If the person who dominates the conversations doesn't understand your simple comments of "Let's see how other people feel" then talk to her one-on-one. Politely go over the guidelines. You may want to put her in charge of a part of the meeting where she can have a leadership role. Having the guidelines to refer to will make it feel less of a personal attack than if you are simply correcting her behavior.

 

Lastly, don't be too hard on yourself. You will learn as you go. Facilitating a support group is often assumed to be a simple undertaking. It's a myth that all one does is announce a meeting, lots of people attend, everyone shares and supports one another, and not personality conflicts arrive. That is impossible.

 

It takes a special person who can effectively communicate with people to lead a support group. A facilitator must be able to gently guide people in the path you wish them to go, so that the group makes a positive emotional impact, rather than becoming a complaint forum. A leader be compassionate, but also able to set boundaries or diffuse anger. As circumstances arise, ask other leaders for ideas and support. And most of all, remember that no leader ever feels one-hundred percent capable. Having a willingness to learn and listen are some of the top leadership qualities in which to invest.

 

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

 

 

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.