Chronic illness Pain Support

How People with Illness Use the Internet

I am working on an article that needed some statistics and came across this research I thought you may find interesting.

Lisa

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

E-patients with a Disability or Chronic Disease

by Susannah Fox, Associate Director
October 9, 2007

Adults living with a disability or chronic disease are less likely than others to go online, but once online, are avid health consumers.

About a fifth of American adults say that a disability, handicap, or chronic disease keeps them from participating fully in work, school, housework, or other activities. Half (51%) of those living with a disability or chronic disease go online, compared to 74% of those who report no chronic conditions. Fully 86% of internet users living with disability or chronic illness have looked online for information about at least one of 17 health topics, compared with 79% of internet users with no chronic conditions.

> Read More

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

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

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.

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

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

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

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.

------------------------------------------------------
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.

Acupuncture? Do you have an opinion?

Dear Ms. Copen:

I was so excited to see my first copy of your excellent magazine HopeKeepers.  I head up congregational care ministry in a large church so was thrilled to see this great resource to help believers cope with illness.  I also oversee adult education and frequently teach on the dangers of cults, new age teachings and other popular ideas that can endanger the believer's spirit. 

 

So when I saw the cover article Is Acupuncture Safe for My Spirit I was thrilled that your magazine would warn people about the dangers this practice can present to the believer. 

Instead, I was disappointed that the article fully supported the practice based on the idea that it works, and can offer relief.  Any search on the internet, putting in the words acupuncture and Christians will pull up plenty of warnings that would make me question its safety for "my spirit."  I'd have liked a more balanced article, warning of the innate nature of the practice that suggests non-biblical ideas about "life energy" (really Chinese religious beliefs based on Taoism - - yin and yang).  That would have been a truer response to the question of whether it's "safe for my spirit."

Thanks for all the help you provide.  I look forward to getting to know your magazine better,

Pastor Bill Sy

_________________________________________

Pastor Sy,

Thank you for taking the time to write. I think it could have been a 25 page article on acupuncture and still not fully provided all of the info. We tried our best to quote some respected Christian organizations and yet also understand that most people will try ANYTHING to get rid of pain. It's safer to warn them not to try anything and to always think about it and pray about it and consult respected pastors and such. I've done articles on the past on Yoga (and is there really such a thing as Christian yoga?) and Bible "cures."

I myself tried acupuncture a couple of times about 15 years ago when first diagnosed and didn't see a significant change. But I would consider it again if it could help me delay a surgery or such. And yet, I think we need to be aware of warning signs because spirits ARE in these places. At the same time, the evil one is everywhere and so we need to use the same discretion with alternative treatments as we would anything.

We tried to reach out the average person who may have been considering acupuncture, and may even truly be helped by it, but with a Christian perspective. I'm sorry we didn't fulfill all we could have, but thank you for your grace.

I know some of our articles will disappoint, but it's nice to have a forum where these topics can actually be addressed, even when controversial. Although some Christian magazines tackle topics like acupuncture, etc. they don't always understand the extreme depression and even suicidal thoughts that enter the minds of those with chronic illness - - who are willing to try anything to get rid of the pain. With that in mind, we don't say "avoid everything" but rather "use discernment, prayer and look at what organizations like the Christian Medical Society have to say about it."

I know other people likely had the same thoughts as you. I'd like to ask permission to reprint your questions and my answer on my blog and see if we can address any other concerns, ideas, etc. I can remove or keep your name. Just let me know.

Blessings and thanks - (really! It's so nice to have someone care enough to write!)

Lisa Copen

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

Hi Lisa,

Thanks for your quick response, I didn't expect one!  You are gracious.  Yes, it's fine to use my name and letter for the magazine or blog.  I still feel strongly about the subject, have heard of a number of folks who innocently got entrapped by things like this, and started experiencing lack of spiritual desire for the Lord, the word, etc.

 

Here's one example of a nonchristian warning about possible dangers:

Reality of Chi

I have been a practioner of the martial arts for several years, and that also includes spontaneous Chi Kung. The Chi they utilize is not a harmonious, benevolent, all prevailing, invisible energy/force which flows binds and permeates throughout the Universe, but rather a sentient life form unto themselves (nor are they discarnate spirits of the dead as is commonly believed in the west) which religions around the world and communities & civilizations throughout history have commonly termed Spirits, Jinns or Demons. Many people around the world have been severely mentally affected to their detriment through the study of such systems which often involve (as will be examined here on in) clearly defined movements/forms or involuntary actions. Once the jinn's enter the host through the relevant nerve, pressure or acupuncture points that flow in channels/meridians, they then inhabit the host and exercise great influence.   At the latter point the only means of redress then becomes undergoing a religious Islamic Exorcism. I am speaking from my own experiences with this phenomenon and not from hear say. I would like to publicize the dangers as much as possible and expose its reality.  http://www.dangerofchi.org

Not that it's gonna happen to everyone, but for me that would make it "unsafe" for the spirit.  At the same time, Lisa, you have helped me to realize how desperate people are when they are in extreme pain.  I'd be interested in the former article you have published on yoga.

May the Lord continue to use you to bring his healing love to others!

Bill 

Video Games May Soon Be Part of Your Physical Therapy

Games for Health recently had their national conference and they had presentations on the many ways  that video games will become more and more a part of rehab and therapy efforts. For example, in a Games for Health conference highlight, a version of the popular video game Guitar Hero was unveiled that is designed to aid arm amputee rehabilitation.

Red Hill Studios presented its findings about the use of PDWii to aid balance and mobility in Parkinson’s patients. PDwii is currently being developed by Red Hill Studios and the UCSF School of Nursing, with funding by the NIH.

They say that quantifiable results are being used to track patient progress and are being integrated into the patient's overall regime.

Results will be used to benefit further innovations in the field of games for health.

For younger patients, there is Ditto, a "multi-modal distraction device" designed to control pain and stress among patients undergoing burn and orthopedic medical procedures.

HopeNotes #40 - Trying to Plan Vacation on a Budget?

A New Issue of HopeNotes has been posted
http://www.restministries.org/hopenotes/2008/05_02.htm

HopeNotes #39 - Looking for a Doc That Doesn't Accept Perks?

A New Issue of HopeNotes has been posted
http://www.restministries.org/hopenotes/2008/05_01.htm

NEW Rest Ministries Web Site

Well... it's done for now! Rest Ministries new web site it up! I still will be re-doing the store and then jumping on podcasts, but the web site that I've been working on since Christmas is finally a reality.

I know some of you feel a bit lost, but the new navigation bar is "really cool." Just read down it so you can get an idea of what sort of thing is on it and then come back as you need to. You will find our program links for things like Share and Prayer and Fibro Splashes and all those groups under "Programs - Make Friends."

I have provided tons of resource links, well over 1000 I think was the last count, as well as loads of books from Amazon. For example, if you are a chronically ill mom, we have some links and books for moms with illness or books your kids may like to read. If your child is the one who is ill, there are books for the kids as well as for you that I've found.

You'll also find lots of links under the area of "Resources - Organizations" broken down as Christian / Non-Christian / Interfaith where you can find other ministries, etc.

And if you are looking for something specific, don't hesistate to click on the search button. The web pages have been titled pretty well, so it should be rather easy (I guess we will see!) to find what you're looking for.

You may have noticed I've removed my email from most pages and have placed a contact form on the site. I know for some that is a pain. If you have my email, it's not changed. But I get about 1-2 spams per MINUTE (about 15,000 per week) and removing my email will help those decrease (or at least not keep multiplying).

I am off to relax for a bit. I hope you had a joyful Mother's Day

Lisa

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

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

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.

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

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