How to Give an Ill Friend Love, Understanding, and Support

I have lost many friends since developing Fibromyalgia. I don’t know why they have chosen to abandon me in my time of need, because they did not tell me. I can only assume it was because being a friend to a chronically ill person is difficult. But it doesn’t have to be! I don’t ask for much; just your love, understanding, and support.

It’s ok to ask me how I’m doing. However, I’m not going to lie and say I feel “fine” just to make you feel better. I’m not fine. I don’t feel fine. I’m not doing fine. I hurt everywhere, I can’t sleep, and it depresses me. But it’s still ok to ask me, because it shows me that you care.

Please, please don’t ask me if I’m getting better. Once I figure out how to manage my pain and other symptoms, the entire world will be the second to know. Until then, everything changes from day to day, minute to minute, even second to second. It’s all about learning how to manage the pain and other symptoms when outside stressors, the weather, and sometimes nothing at all can change where it hurts, how it hurts, and how much it hurts.

I beg of you not to tell me that I need to exercise more or to just “walk it off.” I do what I can – light stretching, moving around, and now even water aerobics. It’s excruciatingly painful. Unless you can feel my pain and understand exactly how my body reacts to every movement, unless you have Fibromyalgia as well as the myriad of spinal conditions from which I suffer, unless you are me, you have no idea what will make me feel better. My son does the best he can in this area, but he doesn’t tell me what I should do to feel better. He asks if there is anything that will help – “Will a bath help?” “Will an ice pack help?” “Will your heating pad help?” “Will your TENS unit help?”

I’m not asking for your pity. I’m asking for your understanding and compassion. If you really want to help me, just talk to me, make me laugh, focus on my abilities instead of my disabilities. If I need to vent, just listen (and it helps to validate my ventings). There is no right thing to say. In fact, more often than not there is nothing that can be said to make things right, make me feel better physically, or change my life or perspective. But one happy or funny moment could change my day. However, saying nothing at all, not even trying, can hurt me deeply. I am, after all, human.

If I’m crying, it’s still okay to talk to me. I don’t cry (much) from the pain. I mostly cry because I’m stressed out, exhausted, overwhelmed, angry, feeling emotional, or just plain frustrated. Sometimes it’s just one remark that sends me over the edge. At any rate, I cannot control this any more than I can control the weather. Again, I only ask for your understanding and compassion.

In short, don’t avoid me because you don’t want to deal with my issues. I won’t force them on you and, for the most part, won’t even mention them until you ask. Unless you’re my Momma. I seem to unload all my pain and symptoms onto my Momma because she’ll actually listen to me and not judge.

Which brings me to my final rant: don’t judge me. I don’t have control over my symptoms, which includes my inability to remember what I need to do as well as function as a normal person.

Keep in mind that Fibromyalgia it is incurable. And ask anybody who suffers from FMS and they will tell you that it is, for the most part, resistant to medications. If I had to list the number of medications I have to take in order to function (and I use that term lightly), you would be shocked. But, please, don’t tell me that I take too much medication. I have ONE doctor prescribing this medication to me, we review my prescriptions every time I see him, and, as he spent years in medical school to become a doctor, I trust his opinion. Leave my medications to him, as he knows what he’s doing and has my best interests at heart.

I can understand that maybe some feel FMS is not such a big deal. After all, it’s not cancer. It’s not heart disease. So, it’s not considered fatal by those standards. However, there are people who suffer from FMS who consider suicide as their only option for relief. Dr. Jack Kavorkian assisted suicide in Fibromyalgia patients. People who suffer from Fibromyalgia feel helpless, hopeless, and unable to obtain any relief from pain and the myriad of other debilitating symptoms associated with FMS (which stands for FibroMyalgia Syndrome). So, it is not life-threatening by the classic definition, but don’t say this to fibro sufferers. This is not a harmless disease.

While people who do not suffer from Fibromyalgia, Chronic Fatigue Syndrome, scoliosis, or any other invisible chronic illness may have a lot of advice for those of who do, we ask that you, unless you are a doctor or pain management specialist in the treatment of these diseases and disorders, please keep it to yourself. We are doing the best we can to manage with what we are given. We don’t want your advice; we don’t want your pity. We want your love, your understanding, your company, and your support.

National Invisible Chronic Illness Awareness Week is essential to help those who do not suffer to understand; and crucial to those who do suffer to find camaraderie.

Jessica Barto has suffered from symptoms of FMS and CFS since she was a teenager. Was diagnosed with Spondylolisthesis in 1993, and FMS in 2007. She invites you to visit her blog, Fibro Blog.

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Wesley United Methodist Church in Morgantown, WV Offers TONS of Activites and Hope!

We just saw this posted on Facebook and although we were aware of Christina’s group beginning we had no idea just what she was planning! Pleeease don’t feel as though you must attempt to live up to what this “Super Woman” is doing, but it is a list of some fabulous ideas (Prayers at Panera!) And the next time your church says they just can’t commit to starting a HopeKeepers group or a potluck seems like so much trouble, print this out to show the pastor an example of a church that has some passion!

-ljc

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LOCAL CHURCH HOSTING ACTIVITIES DURING NATIONAL INVISIBLE CHRONIC ILLNESS AWARENESS WEEK
SEPTEMBER 14 – SEPTEMBER 20, 2009

Wesley United Methodist Church, located at 503 N. High Street in Morgantown, WV, will be hosting numerous events during National Invisible Chronic Illness Awareness Week (September 14-20, 2009). These events are open to anyone in the community who is seeking support in a Christian environment to cope with the effects of living with chronic illness, chronic pain, or disability. If you have questions, please contact Christina Werdebaugh, HopeKeepers® Group Leader, at (304) 692-9199 or Wesley United Methodist Church at (304) 292-9485.

PLEASE NOTE THE FOLLOWING SCHEDULE OF EVENTS:

• SEPTEMBER 13, 2009 –Christina Werdebaugh, HopeKeepers® Group Leader, will speak briefly at both the 8:30 and 11:00 services about the upcoming weeks’ activities, and will be available after both services in the Lecture Room to answer any questions you may have. Please check the Sunday Bulletin for updates and more information about the HopeKeepers® Small Group/Bible Study as well the events planned here at Wesley, and in the community, in recognition and to raise awareness of National Invisible Awareness Week.

• SEPTEMBER 14, 2009 at 7:00 pm, is the first meeting of HopeKeepers® at Wesley! We will meet in the Lecture Room at the Church. Our first night together will begin with a special gift of music, followed by a time of fellowship to get to know one another and enjoy some light refreshments. Then, we will begin with Chapter One of our first Bible Study together entitled, “When Chronic Illness Enters Your Life” by Lisa J. Copen. This particular study discusses topics such as “Where Is God When It Hurts?” and “Lord, I Just Don’t Understand!”

• On Tuesday, SEPTEMBER 15, 2009 at 7:00 pm, Wesley will host a Prayer, Healing and Anointing Service for our HopeKeepers® Group Members and all others who desire to attend! We are extending a special invitation to the other HopeKeepers® Group in our local area, as well as the family members and caregivers of those suffering from chronic illness/chronic pain, or disability. We welcome everyone who wishes to attend this service to receive support and prayer for themselves or on behalf of another. Rev. Michael Atkinson will lead this special service which will be centered around the greatest healing of all, the reunion or reconciliation of a human being with God. Although physical healing does often occur, this worship experience provides an atmosphere in which mental and emotional balance is often restored, spiritual health is enhanced and relationships are healed. The purpose of this worship experience is to renew and strengthen one’s relationship with the living God. This service will also be filled with music during our times of prayer and outreach to those in need. Our souls, hearts and minds will be comforted by the musical offerings of Stan Farr and Joe Andria, members of our congregation, in addition to the soothing sounds of a local harpist, Katie Zucker, and a trio, Andrew and Elizabeth Wotring-Nelson and Rebecca Speakman. We are thankful to all of these musicians who come forth to share their gift of music before the Lord in support of those suffering from chronic illness/chronic pain and invisible or visible disabilities.

• On Wednesday, SEPTEMBER 16, 2009, at 6:00 pm, Wesley will host a “potluck supper” at the church for our new HopeKeepers® members and their families and caregivers, as well as all HopeKeepers® Groups (and their families and caregivers) in the area. All members of our congregation and the community who wish to come and support this important ministry and outreach are welcome to attend this opportunity to share in fellowship with those needed our prayers and encouragement!

• Thursday, SEPTEMBER 17, 2009, at 7:00 pm, will be an opportunity for our new small group to meet the other local chapter of HopeKeepers® at the Morgantown Church of God located on Mississippi Street. It will be a great opportunity to fellowship with the other Hopekeepers® Group in our area.

• Friday, SEPTEMBER 18, 2009 12:30pm – 2:00 pm at the VIP Room at Panera in Morgantown, WV Wesley HopeKeepers® will host “Prayers at Panera”. We plan to meet during the day on Friday to provide an opportunity for those who may not have been able to attend some of the weeknight events due to scheduling conflicts, etc. This is also open to anyone who did attend the other events and would like to join us to enjoy some additional prayer and fellowship time as part of the HopeKeepers® Group at Wesley. Morgantown Church of God’s Chapter of HopeKeepers® is also invited to join us for “Prayers at Panera.”

• On Sunday, SEPTEMBER 20, 2009, Christina Werdebaugh, HopeKeepers® Group Leader at Wesley, will participate in the both the 8:30 and 11:00 services to offer her perspective on perseverance and keeping faith in God despite living with chronic illness/chronic pain or disability, and how we, as a church, can reach out to those suffering from chronic illness/chronic pain, invisible or visible disabilities. A punch and cake reception in honor of HopeKeepers® and II Week will be held following the 11:00 service, hosted by Christina Werdebaugh.

Contact: Christina Werdebaugh, HopeKeepers® Group Leader
(304) 692-9199 or cjes2000@hotmail.com

Wesley United Methodist Church
(304) 292-9485
503 N. High Street Morgantown, WV 26505

Additional information can also be found at www.invisibleillness.com

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Email Your Pastor or Clergy

Take just a minute to copy and paste this email and send it to your pastor. Be sure to add your 2-cents about why this is important to you and maybe a bit about what your illness is (keep it brief).   Sign off with something personal to make this letter your own.

To copy and paste quickly, highlight the area below, choose “edit” “copy” and then paste it into an email program.

Dear Pastor,

I know you are very busy, but I realize you must see many people
in the congregation who struggle with how chronic illness impacts
their lives and relationships. I wanted to bring to your attention
that National Invisible Chronic Illness Awareness Week is September
14-20, 2009 [ http://www.invisibleillness.com ]. This week is
an annual outreach of Rest Ministries [ http://www.restministries.org
] a national ministry that resides in San Diego and an affiliate
of Joni Eareckson Tada’s ministry for the disabled.

You may be surprised to know that nearly 1 in 2 people live with chronic
illness. Here are a few other staggering statistics:

* 96% of illness is invisible and sixty percent of the people are between
the ages of 18 and 64

* 90% of seniors have at least one chronic disease and 77% have
two or more chronic diseases

* The divorce rate among the chronically ill is over 75 percent

* Depression is 15-20% higher for the chronically ill than for
the average person;

* 70% of suicides have uncontrollable physical pain as a factor

* 66% of people with illness say if their church started a Bible
study for those with chronic illness they would definitely attend.

The sources for these statistics and even more information is listed here:
http://www.mychronicillness.com/invisibleillness/factsheet.htm

I’m wondering if our church may make just a small effort to acknowledge those
whom live with illness and suffer silently.

Some easy ways to do this could be:

+ Have a bulletin insert about invisible illness.

+ Have a special moment of prayer for the families impacted by illness (nearly everyone!)

+ Set up a table of resources our church provides for those who are hurting.

+ Have someone give their testimony about how God has worked through his or her illness.

+ Consider asking is there is an interest in starting a Bible study like HopeKeepers

+ Run an article in our church newsletter about illness. Rest Ministries can provide this or someone in our church could write one.)

+ Offer a resource for the chronically ill, like a frangrance-free seating area, or online webcasts or podcasts.

+ Start a library of resources for the chronically ill (I’d be willing to help gather some materials to present to you.)

I’m involved in this because _________________________________.

Rest Ministries provides a wealth of support to over 75,000 people each month via their web site and they have a couple hundred HopeKeepers support groups in the U.S. and beyond. The web site has daily email devotionals, online chats, online Bible studies, and many other services, including HopeKeepers Magazine, and a social network.  There is a video on their web site that shares about how it was began 10 years ago by Lisa Copen at http://www.restministries.org
.

It is wonderful for the homebound who have little or no contact with the world outside their homes, as well as those who simply want to connect
with others who are living with a chronic illness and need spiritual support.

The ministry is completely ran by volunteers based on the scripture, “Praise
be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed,
it is for your comfort and salvation; if we are comforted, it  is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.” (2 Corinthians 1: 3-8)

Please let me know if I can be of any further help. I’d love for our church
to be able to reach out to all of those who are living with  chronic illness–and since it’s invisible– they feel like no  one understands.

Blessings,

_______YOUR NAME_______
______YOUR PHONE_______

• 6 Ways to Let Those with Chronic Illness in Your Church Know You Care
• 7 Secrets The Chronically Ill Want Chaplains to Know
• Hospital Visits: What Do You Talk About?
• Minister to the Chronically Ill: 20 Ways in 20 Minutes
• What’s the Big Deal About Church?
• When a Friend Has a Chronic Illness: What to Say, How to Help
• What I’dLike to Tell My Pastor About Living with an Illness

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Does Mental Illness Count? YES!

We are frequently asked if Invisible Illness Week includes mental illness. Yes!

It’s invisible, right? While we would like to expand our resources for those living with mental illness, we do have few. Please feel free to email us more or articles you may have.

> Mental Illness Awareness Week is Oct 4-10, 2009
> See statistics here

HOW DOES “THE CHURCH” ADDRESS MENTAL ILLNESS?

Since NICIAW is sponsored by Rest Ministries a Christian organization, we want to also take a look at how mental illness is addressed by churches. Living with a mental illness, whether it’s bi-polar, schizophrenia, depression or one of the many other mental illnesses, it is a frustrating, experience that can leave one feeling somewhere between annoyed with themselves and life, to being suicidal.

Imagine turning to the church for encouragement and understanding and being told that if you “just prayed harder,” it would go away.

As our population continues to age, the faith community has become more proactive in finding ways to meet the growing needs of those who suffer from chronic conditions cause by aging and the body’s degeneration.

However, there is still a large attempt to educate the church about those who live with invisible illnesses, such as lupus or fibromyalgia, as well as the millions who live with mental illness.

Unfortunately, our churches are ill-equipped to reach out to this community of people because they basically don’t know how. But churches do not need to know everything about mental illness in order to create comforting and accepting place.

In a speech entitled, “Stigma of Mental Illness: The Role of the Faith Community,” Gunnar Christiansen, M.D. presented at the 2003 NAMI Oregon Convention, he said, “Spiritual strength will diminish, however, unless it is constantly nurtured through giving and receiving loving care in our relationships with others. Thus it is of major importance that each of us attempt to develop a welcome and spiritually nourishing environment for those affected by mental illness in our own place of worship.”*

A variety of resources are available for those who live with mental illness and are looking for Christian support. We recommend the following:

Participate in National Invisible Chronic Illness Awareness Week. Mental illness is an invisible illness and we are looking for more representatives to join us in spreading the word and educating others.

SECULAR RESOURCES

NAMI (National Alliance for the Mentally Ill)

National Mental Health Association is the country’s oldest and largest nonprofit organization addressing all aspects of mental health and mental illness

NARSAD The Mental Health Research Association by National Alliance for Research on Schizophrenia and Depression,

The National Network of Adult and Adolescent children who have a Mentally Ill parent/s. Australian- but still great resources.

FAITH RESOURCES

National Alliance of Mental Illness (NAMI)”Faith Net” The “religious” department of this organization which seeks to bring awareness to religious communities about mental illness facts.

Pathways to Promise is an interfaith technical assistance and resource center which offers liturgical and educational materials, program models, and networking information to promote a caring ministry with people with mental illness and their families. These resources are used by people at all levels of faith group structures from local congregations to regional and national staff.

Mental Health Ministry Resources Books, tapes, resources, wonderful!

Mental Illness and Faith Communities Helping faith communities become caring congregations - excellent. Be sure to read the articles/brochures/inserts available.

*Substance Abuse and Mental Health Services Administration - National Mental Health Information Center - Article: Building Bridges: Mental Health Consumers and Members of Faith-Based and Community Organizations in Dialogue

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Chronic Illness Coping and Faith Statistics

Majority of Doctors Say Faith Helps Patients - A survey finds that 85 percent of U.S. doctors believe religious faith can help patients have a good outcome. Researchers polled 1,144 doctors for the study, which was published in the Archives of Internal Medicine, The Los Angeles Times reported. Only 1 percent said they believe religious faith and spirituality have a negative effect, while 2 percent said it has no effect and 12 percent said they think the positive and negative effects are balanced.

Doctor shares viewpoint on praying with patients - (Excerpt) “After a few moments, the parents turned to me and asked for my hand. Uncertain, I extended my fingers to touch the mother’s. “Please pray with us” was the request, and, following their suit, I bowed my head. Their moving prayers sought God’s help in curing the boy and pledged their acceptance of his decision…”

Majority of Doctors Say Faith Helps Patients -

ASIA: Scientists find religion good for health - “While meditation is known to reduce stress, blood pressure, heart rate and anxiety, Dr Jantos says prayer is far less accepted as having a place in the secular medical arsenal. But he says it can be of equal benefit to patients — even if doctors don’t think it will work.”

Ill Teens with Spirituality Cope Best -

Physicians View Religiosity as Factor in Patients’ Health - A majority of physicians in a large survey declared that religion and spirituality, including divine intervention, affect their patients’ health. The survey of more than a thousand practicing physicians found that 56% believe religion and spirituality have a significant effect on health, researchers reported in the April 9 issue of the Archives of Internal Medicine.

Can Faith Makes Us Feel Less Pain? Studies Prove Yes -

Spirituality, religion helps lower BP - A study of more than 5,000 African Americans has found that being involved with or participating in religious activities can significantly lower blood pressure, even in those people who are likely to be classified as hypertensive, having higher levels of body mass index (BMI), and lower levels of medication adherence

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Christian Resources

Did you know National Invisible Chronic Illness Awareness Week is sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill? Rest Ministries is also an affiliate of Joni and Friends.

We have tools specifically to help your church remember the many people who are suffering silently.

• Order a high-resolution copy of this year’s video to play in your church service.
• Set up a table with resources such as brochures about Rest Ministries and rack cards about Invisible Illness Week or tracts. Some of our other favorite goodies are silicone bracelets and JOY cards (Just Giving You… cards that you give to a friend who is hurting.) Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend is also a great book to have available or as a giveaway if your church is willing to buy some.

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Article #1

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Email Your Pastor

coming soon

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Video for Church

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Prayer Team

more info coming soon

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