Reflections on How People Respond to Visual “Pain” Experiences

It had been many weeks since I have been to church. My rheumatoid arthritis had been flaring for months now. I had been off of my main medication since August of 2008 due to infections and then pending surgery.

While my husband and son left on Sunday mornings I would attempt to log on to the church’s web site to watch the broadcast. Some days it worked. Some days it did not.

But a couple of weeks ago, after I had had joint replacement surgery on my left hand, my family decided to go on a Saturday night service when my body would be less sore. Any outing would be nice and I was eager to the back and receive some refreshment from the Lord.

We got there a few minutes early and I went into the bookstore and wandered around. I got a few odd looks from curious people who quickly turned away. I smiled back and people nervously may meet my gaze enough to be polite.

While my husband went to check my son into Sunday school, I sat down outside. About six men who were ushers all stood within a few feet with their microphones in their ears, laughing about doing push ups. They glanced over me a few times, obviously wondering if they should talk to me or not. I smiled, as if to invite conversation, but then they turned away back into their safe huddle.

Many people walked by and did not even look at me. I’m used to that as I am not some beauty, but still, some people have said my splint resembles something from Edward Scissorhands. A few people glanced over at the contraption on my hand but never smiled or looked up at my face.

My husband and I joined my mother in the church and sat down. During introductions after worship one woman in front of us leaned over and said something like “Boy, that looks like it hurts.” I smiled and said thanks and explained I had gotten new joints.

The speaker was Lieutenant General William Boykin (Exceptional! You can listen here.)

It was inspiring, and exciting to listen to. At the end of his message “Who Should I Send?” he had everyone close their eyes and people who wanted to accept Christ into their hearts were to raise their hand. We all said the prayer of acceptance of Jesus into our lives together.

As the service ended I grabbed my pillow that I had brought to rest my arm on and stood up. My husband was the first of us to leaves the pew and was nudged forward before I could get out of it myself. People streaming out of the church resembled a southern California freeway and I was protecting my hand too much to risk merging into the oncoming traffic.

I yelled to husband to go ahead and go get Josh because I couldn’t “get out.” I waited about 60 seconds to merge into the aisle. Guarding my arm, people still brushed by me. Finally I got into the aisle and had to holler back to my mom, “I will meet you outside” as I was pushed along.

All I wanted to do was glance at the book table to see the price of the book (Never Surrender) and then to get outside, but people wanted to get to the table ahead of me and also to the long line for the speaker to sign the book. There was confusion over two lines: one to buy the book, the other to get the book signed. So at times I just stopped and tried to wait for the flow of traffic to go by in the opposite direction so that I could get out of the auditorium.

But then people beside me and behind me impatiently said “I need to get by you…” At one time I said with irritation, “I am just trying to get out too and can’t seem to get through.”

At last I got outside. As the evening went on however, I reflected back on my experience. There is the human side of me that will admit to that the thought occurred to me if I was a conference with Joni Eareckon Tada’s ministry, Joni and Friends, I would be the speaker, and people would be lining up for me to sign their books, as in the past. But tonight, I was just an inconvenience, someone in the way, someone who would remind people that life was imperfect and they too are vulnerable.

I thought about the fact was that the church had just had an amazing speaker who just invited people to accept Jesus into their lives to help them through the valleys and challenges that we will face in this lifetime on earth.

What if I was not a believer and my family brought me to church hoping that I would accept Jesus into my heart during this recovery of a joint replacement?

What if I was just so encouraged by the speaker that I had actually raised my hand to become a Christian .. and then I was unable to even get out into the aisle?

As I got outside I ran into a couple of friends. One said I had good “color” (I told her it was the makeup.) Another who said something like “So it’s a lot better now, right?” (I didn’t say it but I thought “Uh, no. I have about five more months of therapy and weeks still in this splint.”)

I have always tried to follow my belief that people are always more important than programs when it comes to my ministry. Programs are necessary and needed, but people are always more valuable. When I mentioned my mixed emotions to a friend she emailed me back, “When I had MS problems a few summers ago I went to church in a wheelchair just so I could go. Not ONE of the pastors (and they all saw me there) came up to us. Most people circled around us like I had the plague. Our small group attendees were warm and that’s all. Boy do I know how it feels to be walking and feeling like protecting myself from being knocked over.”

I’m not looking for a pity party. I’m not even looking for people to run over and have a conversation about the weird contraption on my hand. For example, it was obvious the men who were ushers felt somewhat uncomfortable, not knowing if they should “intrude” and ask me what had happened to my hand, or if they should ignore it.

My degree is in sociology and so I can’t help but look at the different experiences I am having in a variety of environments. And it saddens me when strangers at the pharmacy or the grocery store show more compassion than anyone in my church body. We have become a society that is so afraid of appearing “nosey” that we don’t even walk up to a sister in Christ and say, “Goodness, that must hurt! How are you doing?”

And at the same time, I hear about many of your experiences too and find that when people believe they can offer a “cure” they are eager to get involved and share their thoughts about your physical condition. Maybe when our condition looks too complicated they shy away since they don’t feel they have answer?

What is my reason for sharing this? I asked myself that before writing it, as I don’t want to have it seem as though I am complaining, or looking for sympathy, or expect Christians to be perfect. To be honest, I don’t even know exactly what I want. I debated about shring this experience with you because I love my church and I know it was a small individualized experience.

I think my true reason is that God has given me the gift of being able to have a ministry like Rest Ministries and has placed me in the position of trying to be an advocate for people with chronic illness or invisible illness.

I want you to know that I don’t have all the answers, but I am experiencing new things each day, both challenges and blessings.

And when you walk into your church and no one will look you in the eye, or they appear to be disinterested — even when you are visibly struggling, I want you to know that is nothing personal. I am experiencing the same thing. And I am also asking myself the same questions as you, like, “What am I doing wrong?” Or “Why do people not seem to care?”

I love the scripture Psalm 138:8: “The Lord will fulfill his purpose for me; your love, O Lord, endures forever— do not abandon the works of your hands.”

We are in this together — both the journey of chronic illness that God has set us on, and also the steps towards gently educating our church leadership on the emotional and spiritual pain that accompanies the physical pain that many suffer from. But regardless of the weaknesses of man, God’s love will endure forever. We will never be abandoned.

Lisa Copen
Rest Ministries Director

Pondering a Helpful Heart

“While we may stand with meaning at the manger, many are moving by just looking at the lights. Are we willing to turn from our festivities and help someone out of the car? Are we willing to lend a hand of assistance and an invitation to open their hearts to Jesus as He says, ‘Behold, I stand at the door and knock. If anyone opens the door I will come in,’?”

—Florence Littauer, Blow Away the Black Clouds

Volunteering Can Ease Pain

Too often we find ourselves sitting in our home, wishing we could go and do something to feel better, yet not knowing if at the end of the day we will feel better– or worse.

Although you may think that volunteering will drain all your energy, you may find that it actually can ease physical pain. And sometimes, even if you are in more physical pain, you may discover that the mental and spiritual joy you gained still makes the physical pain worth it!

Volunteering has been found to:

Enhance self-esteem through the “good feelings” derived from helping others and feeling worthwhile and needed.

Distract one from one’s aches and pains, providing motivation for rehabilitation and activity, helping overcome social isolation, and providing a sense of community and belonging.

Key benefits of volunteer work include: skill development, coping with isolation, the chance to “give back” to the community, to meet people, to enhance job prospects, personal growth, personal empowerment and to gain a new perspective on one’s own problems.

Research Summary: Graff, L. (1991). Volunteer for the Health of it Etobicoke, Ontario: Volunteer Ontario.

Emmanuel Faith Community Church Reaches Out To Ill at Turkey Time

I received this email from Emmanuel Faith Community Church and thought it simply wonderful. If your church has an outreach ministry to people at thanksgiving, let them know that there are many chronically ill people too who would love fellowship and/or food.

I always say. . . remember that the Bible tells us not to “announce it in the next bulletin” or to say “call us if you need anything” but “Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame,”‘ (Luke 14:21).

Thank you, Emmanuel Faith Community Church, for reminding of this!

Dear Chronic Illness Support Group Members:

Each Thanksgiving since 2003, the Married & Company Sunday School class at Emmanuel Faith Community Church love to provide a limited number of complete Thanksgiving Dinners that they purchase from Major Market to persons in our support group who meet one or more of the following criteria:

1. Persons who have limited energy or severe pain, for whom cooking a special meal would be nearly impossible.
2. Persons who are alone and have no one to share a meal with, or live with just one other person and have no place to go for Thanksgiving.
3. Persons who are experiencing financial challenges and who would find purchasing a Thanksgiving Dinner with all the trimmings a hardship.
4. Persons who feel they would be blessed by a visit and a meal from another family due to loneliness, isolation, and/or depression.

These meals can be delivered on Wednesday, Thursday, or Friday during Thanksgiving week. Please give me the following information when you contact me if you feel you qualify on even one of the criteria. Please contact (name removed) as soon as possible with:

1. your name,
2. the number of meals you need,
3. your address,
4. your phone number,
5. your email address,
6. the day and time frame you would prefer the meal to be delivered.

Blessings to you.

What is Ministry?

Ministry Is….

Listening, when you’d rather fix the problem.
Searching for the joy, when it’s easier to say “it’s not fair.”
Helping, when you feel like you’re the one that needs the help.
Telling God, “use me,” when you’d rather ask to be rescued.
Encouraging, even when you don’t understand God’s reasoning.
Hugging when it feels awkward.
Saying, “let’s pray right now,” instead of “I’ll pray for you.”
Serving, when you doubt you have anything left to give.
Comforting, by being the flicker of light in others’ dark caverns.

“Do not grieve, for the joy of the Lord is your strength.” Nehemiah 8:10
[author unknown]

Is Your Church Building Safe?

Many times we are prevented from attending to church due to everything from new carpet that has chemicals in it to mold in the walls that is making our chronic illness or chemical sensitivities worse.

This article by James Rogdgers, “Blind Spots: Why we sometimes can’t see problems with our facility,” is an excellent viewpoint from a pastor. It’s published by Christianity Today.

I realized changing the nursery was not just a facility issue, but really a ministry issue. . . . With a nursery that smelled musty and had mold marks on the walls, we were sending a terrible message to visitors: “Your babies may not be safe here, and we aren’t doing anything about it.”

Why did I miss this clear message? I love my children. I look out for their best interests. I had a child in the nursery. So why did I miss something that should have been so clear?

As I reflect back on that situation, I realize several issues commonly cloud our perspective of our facilities. Now as I work with a church architect, I find myself working with pastors to pull back those clouding issues to understand the messages our facilities send. >> Read More

I encourage you to read this and remember it if you ever want to approach your pastor about changes in the structure or services of the building. “Hearing it” from a pastor’s perspective may grab his attention and he will be willing to listen to your heart too.

What I’d Like to Tell My Pastor About Living with Illness

Living with chronic illness is lonely. Everyone around us seems to be enjoying health, happiness and the ability to pursue their dreams. But we are lonely, scared, and disappointed. We are living with an illness that we have not been able to pray away, cry away, or confess away and so we turn to our church for guidance and acceptance. But churches are made up of people—all of us imperfect. We asked our readers, What would you like your pastor to know about living with a chronic illness and your need to serve others, or be ministered to, within the body? Here are some of your heart-felt replies.

(Please add your comments below to add your own 2-cents about what you’d like your pastor to know.)

I know I am young and you may not believe I am feeling well enough for leadership, but the Lord has worked in my life in so many ways through my illness and I am bursting to be a part of an “illness ministry” to encourage others. Please make some time to sit down and let me share my new calling with you. —Renee

It is very difficult for me to get to church due to the fact that the services are about three hours long and I have problems sitting for long periods of time. When I come, I have to choose between worship or the sermon. No one ever calls or checks to see why I am not there and I used to be one of their Sunday school teachers. I think they have a problem with the fact that I am one of those that have not been healed. —Doris

Every time we have gone to church and we have gone for prayer and I have sought out help, people keep telling me one of two things: “Patty, by His Stripes, You are healed… You must have faith; if you have faith then you will be healed,” or “You must not be praying hard enough.” I can’t tell you how much that hurts, and how I keep feeling like a failure when I am told that. —Patty

Some of us simply want to rest confidently in the Lord and rely on Him for provision during long periods of ill health. I want rest, calm and privacy—not to be cut off from kindly connection with people—but not to have knocks on my door at all hours of the day and night, either! —Caron

There needs to be a ministry devoted entirely to helping others: meals to the woman who just had a baby or rides to doctor appointments. Please help me out by seeing past the “you look fine, so you must feel fine” mentality. —Bridget

Those who live with chronic illness need understanding first, love second, and challenge third. There are times when an ill person can’t function, and the church and its leaders need to be understanding, prayerful and available—for solving practical needs as well as spiritual counsel. —Kay

Find out limitations, hindrances to participation. Ask, “What barriers, hindrances are there that prevent you from coming to church, worshipping with us, participating fully?” or “What can we do to help you to be able to participate more fully in church life?”

Be supportive, take me seriously, not down-playing my illness and yet not drawing too much attention to it either. Suggest helpful tapes, books and articles that help me keep my eyes focused on God.

I’d like people in the church to ask how they can help me in practical ways and offer some suggestions of what they could do, such as: rides to doctors, doing shopping, baking or housecleaning.

Invite me to activities even if I probably can’t attend and when inviting, give as much details re the proceedings, program, length, environment, etc as you can. Don’t be hurt if I can’t come.
—Marguerite

Even though I went through physical therapy and rehabilita-tion, I was unable to continue working. This was very devastating. In the months following the accident, I learned to rely on my Lord and Savior Jesus Christ for comfort.

My husband was also disabled and this caused a greater stress. I was most grieved because my church family didn’t visit and the telephone calls were few. Don’t just tell people you’re praying for them. Come pray with them. Don’t ask if there’s anything you can do, come prepared to do!

Don’t ask if there is a financial need; think of the expenses you have in your household and, if they don’t have an income, there has to be a need. Don’t think that because they aren’t complaining they aren’t hurting. Don’t tell them to “give their problems to God.” Take that person and their problems in your hands and hold them up before God. —Wanda

Please don’t discuss details of my illness with others without my expressed permission. When someone asks how I’m doing, they don’t need to know that I now have a catheter. Ask me, “When others ask, what shall I tell them?” I will be happy to tell you how much information to share. —Rev. Koiv

My pastor feels very uncomfortable with people who cannot work hard and “Go! Go! Go!” for the Lord. His sermons are filled with “You must do this and you must do that!” I leave the service beaten up in spirit because my body is unable to “Go! Go! Go!” I fight depression because of the chronic pain and lack of sleep so I’m not “Happy! Happy! Happy!” all of the time. He feels that if you don’t “whistle while you work” then you better get on your knees before God! (Like I could get down on my knees and then get up again?) —Judy

My church seems to operate under the misconception that a person who is disabled by a chronic illness, as I am, doesn’t need to serve the church. They are content with my just showing up for worship when I am able.

I feel a compelling need to serve my Lord and my church. But I am no longer physically able to fill any of their traditional roles offered as service opportunities. When suggesting possible alternatives, I am met by rejection where it might cause someone else more work, or they just can’t see out of ‘the box’, or simply patted on the head and told to rest and not worry. This makes me feel useless, helpless, and a “lesser” person in the church – a burden.

My disability makes it extremely difficult for me to counteract these obstacles – I need my pastor or another leader to champion my cause for me. I need him to teach/motivate others in the church to extend a hand so that I might participate as fully as God allows. —Jean

As my pain grew worse over time, I realized that I could not do all the ministry that I wanted to do and had been doing; I am the pastor’s wife and was diagnosed with fibromyalgia. It was difficult for me to admit to our congregation that it was physically necessary for me to relieve myself of certain duties since I appeared fine. I periodically missed church, but I tried to go no matter how I felt.

As time went on, I decided to give up areas of ministry: I quit teaching; I quit singing in the choir; I quit being the secretary. I stood up in a service and, by way of testimony, explained my situation. The people were very supportive and did not look down on me because I was withdrew myself from ministry. Our church was encouraged to get behind me and hold me up. My (pastor) husband made sure that he provided updates on my progress.It was important to me that he validated my illness and supported my decisions.

It is difficult when someone steps down from ministry in order to attend to the physical needs of their bodies. But God has told us that this is his Temple and we are to take care of it. God sent new families to our church during my time of hiatus from ministry. My husband was very influential in plugging them into the vacant ministries. Because he supported me and my decision to remove myself, others were given the opportunity to serve the Lord and I have been able to focus on my relationship with the Lord more through this time. —Pamela

-ljc

Related Articles

• Wesley United Methodist Church in Morgantown, WV Offers TONS of Activites and Hope! (invisibleillnessweek.com)
• What is an Invisible Illness? (invisibleillnessweek.com)

Abuse Recovery Resources

Did you know the month of October has been National Domestic Violence Awareness Month?

Here is a great web site/resource I wanted to point in your direction if you or someone you love is in an abusive relationship. Oftentimes women do not talk about their situation, and those who live with chronic illness may really feel “stuck” because if they leave an abusive spouse they may be without health insurance, transportation, a roof over their heads, and even a “caregiver.” (Many abusive spouses may have their “wonderful” moments, being a caregiver to their wife, and then later, actually physically hurting her even more severly.)

When Love Hurts is an abuse recovery blog and the founder of this is Mary Yerkes, a dear friend of mine, who I am have c omplete confidence in her abilities, beliefs and compassion.

She describes this blog on her site in the following way:

It exists to educate, encourage, and assist women facing domestic violence or spousal abuse, separation, or divorce, and women struggling in dysfunctional marriages or recovering from childhood abuse issues,. Further, it exists to educate pastors, churches, and ministries about abuse, its effects on women and families, and to provides tools and resources for healing. When Love Hurts offers biblical hope, practical help, and spiritual healing to abuse survivors and those who love them by pointing them to Jesus Christ, the true source of life and healing.

Though we don’t have a group or specific support for those in abusive relationships here at Rest Ministries, we hope you will seek out other Christian resources such as When Love Hurts. There are many articles, resources and even Educational Materials for Pastors and Churches

My Parents Don’t Believe I am Really Ill

I am 36 and was diagnosed with fibromyalgia last year, but I’ve had the severe symptoms for about 3 years. My husband has been supportive, but my parents don’t believe I really have this illness and if I do I should just take the medicine they see on the commercials and get on with life.

I love them and want to still have some kind of relationship with them, but it is causing stress on my marriage too, because my husband can’t bear to see me hurt by them any more. -Sherry

Dear Sherry,

I’m sorry you’re hurting. Sometimes it can be very difficult for others to understand or to accept the reality of a chronic illness. Often times, they don’t realize that the debilitating affects of an illness like Fibromyalgia vary from patient to patient and that, for many, it just isn‘t as easy as “pushing ourselves“ or “taking a pill” in order to maintain the life we once led. And, unfortunately, ads from pharmaceutical companies are aimed at selling a product and don’t adequately present the varied symptoms of such a complex disorder.

I recommend a couple of resources that may help your parents gain a better understanding of how your illness affects you. One is a Fact Sheet from the National Fibromyalgia Association. And the other is an article titled, “What’s Going On? A Simple Explanation of Fibromyalgia- Making Sense of a Complex Disorder, For Those Who Don’t Have It”. The second is one of the best I’ve found and really describes how FM affects the body in simple, easy to understand terms. I hope it helps. J

Beyond that, it is important for you to do whatever is needed to reduce the stress your relationship with your parents is placing on both yourself and your marriage. I know it’s heart-breaking to consider limiting the amount of contact between you. And I, myself, understand how painful it can be not to have the support of those dearest to you, especially when facing an illness. It can feel like a dagger through the heart sometimes. But, in order to improve and maintain your health as much as possible, it is crucial to address both your physical and emotional needs. Since we know that stress exacerbates the symptoms of FM, it’s important to limit stressful situations as much as possible and to maintain positive, supportive relationships in your life.

I’m so happy to hear that your husband is understanding and supportive! That is truly a blessing! And it may be that, one day, your parents will come to be supportive, as well. I would encourage you to share these articles with them. If you haven’t already done so, you might also try writing them a letter, expressing your feelings. Explain to them what a typical day, living with your symptoms, is like for you. If you have done all you can do to try to help them understand, and they still fail to be supportive, then it may be necessary to distance yourself from them for a time. Focus on doing all you can to have a positive emotional outlook and this will help you immensely, both in managing your FM and in dealing with your parents.

Sherry, I encourage you to continue to pray for your parents’ understanding. And, at the same time, ask God to give you strength to change the things you can and peace to accept the things you can not. He can ease your hurt and help you learn to, once again, lead a joyful, productive life, even while managing the effects of your illness!

In Christian Love & Service,

Angela Dobbins, Founder
True Life Family Ministries
True Life Strategies – life coaching with hope & heart

Angela Dobbins is a Christian life coach in McKinney, TX. She lives daily with the effects of Fibromyalgia, Myofascial Pain Complex, and various sensitivities. Angela’s passion is to share God’s love with others and to assist them toward becoming all He created them to be, even in the face of seemingly insurmountable odds.

Cecil Murphey Tells What to do for Friend with Cancer

The World Health Organization reported that by 2010 cancer will be the number one killer worldwide. More than 12.4 million people in the world suffer from cancer; 7.6 million people are expected to die from some form of cancer.

Do you have a friend or loved one diagnosed with cancer?

Here are some practical things you can do to help:

• Don’t ask, “How are you?” Ask, “Do you feel like talking?”
• If the person is in pain, keep the visit short.
• Don’t say, “Let me know if you need anything.” (They probably won’t and may not even know what they need.)
• Don’t say, “I know how you feel.” (You don’t.)
• Don’t try to comfort them by describing how badly you or someone else suffered during surgery, radiation, or chemotherapy.
• Be slow to offer advice, even if you’re asked for it.
• Pray with them. If appropriate, hold their hand or touch a shoulder. The human touch is powerful, and it shows the human connection.
• Be willing to sit silently with the person.
• Allow the person to cry. Many people get nervous when someone around them becomes emotional, so be prepared to accept and to respect their actions. Crying is a great stress reliever. Think of crying as a step toward facing their disease.
• Offer to gather more information. Do research. Don’t push the person to try alternative medicine or to find another doctor. If the patient asks for that kind of help, however, be willing to provide information or refer them to someone who can.
• Offer to drive the person for chemotherapy or radiation treatments (or arrange for others to do that).
• Depending on the seriousness of the cancer patient’s condition, offer to do practical things, such as clean the house, assist in answering letters, cut the grass, or make phone calls.
• If the person with cancer knows it’s terminal, help to plan a family reunion. Make it a time when people can lovingly say goodbye. Ask those who can’t attend the event to write a letter to express their love.
• Help plan for a family picture with as many relatives and close friends as possible.

Excerpted from: When Someone You Love Has Cancer
Text Copyright © 2009 by Cecil Murphey, Reprinted with Permission
Published by Harvest House Publishers, Eugene, Oregon 97402

You may also be interested in Rest Ministries book, Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend.

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