This article, which seems relevant for those of any faith given human nature, shares what people with chronic pain or illness would like their spiritual community to know about their special needs and wishes. Lisa Copen, who lives with fibromyalgia and rheumatoid arthritis, is founder and director of RestMinistries.com, a nonprofit dedicated to practical & spiritual encouragement of persons coping with chronic illness or pain - and sponsor each September of National Invisible Chronic Illness Week (see the 2012 presentations here).
What I’d Like to Tell My Pastor About Living with Illness
Lisa J Copen*
Living with chronic illness is lonely. Everyone around us seems to be enjoying health, happiness, and the ability to at least pursue their dreams. But many of us feel lonely, scared, and disappointed. We are faced with so many insecurities and we are living with an illness that we have not been able to pray away, cry away, or confess away.
So we turn to our church for guidance, for acceptance, for unconditional support during the most difficult time in our life. But churches are made up of people - all of us imperfect. And our church does not always give us what we need; in fact, sometimes, the people say things that hurt us even more.
“Everything will work out fine. Just keep praying.”
“If you just came to Bible study I am sure getting your mind off the pain would make it all go away.”
“You need to keep praying for healing. Remember that verse when Jesus asked the disabled man if he wanted to get well?”
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 the heart-felt replies... [names deleted]:
• 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.
• 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.
• 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: “…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.
• 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!
• 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.
• 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.
• 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.
• Even though I went through physical therapy and rehabilitation, I was unable to continue working. This was very devastating. In the months following the accident, I learned to rely on my [faith] 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.
• 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.
• 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?)
• 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.
• 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 withdrawing 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….
* This article, first published April 13, 2012 on RestMinistries.com, is reproduced with kind permission of Lisa Copen.©Rest Ministries, Inc. 2012. All Rights Reserved. Lisa lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why, at the Rest Ministries shop.