by Lisa Copen
We often assume that the chronically ill are in the minority, however, you may be surprised to know that nearly 1 in 2 people in the USA have a chronic illness and about 96% of it is invisible. Are these women attending church retreats? Too many of them are suffering silently. They are depressed, isolated, and sometimes questioning if God really cares. Others, you will find, are some of the wisest, joyful, and spiritually mature women you will ever meet. They will touch your retreat attendees in ways that even the planned speaker will not. But are any of them coming?
Rest Ministries is the largest Christian organization that serves the chronically ill, and they recently surveyed 20 people about the specifics of attending a retreat while living with illness. Out of the twenty respondents, seventeen attend retreats less since their diagnosis. When asked why, they shared the following:
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 can you reach out to these women and get them involved in your church retreat?
1. When weighing different retreat locations, consider the limitations of people with chronic illness when asking the retreat centers questions. Promote that you have this information before people register.
How steep are the hills? Are ride-in carts available? How far are the rooms from the main meeting center? Is electricity in the rooms? Are there only bunk beds? Can someone have a private room? Are there chairs besides the metal folding chairs? Elevators? One woman shares, “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.” Those who attend retreats look for locations that are held at retreat center without a lot of walking, and preferably flat ground. Hotels or a large home are nice too. While you may think fifty yards is a “short distance,” fifty steps may be one’s limit. Provide actual distances on your flyer, not just “rooms are a short walking distance.”
2. Understand that women desire to go on retreats and socialize with others, but they must feel that the retreat planner understands that they will be on their own schedule
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.’ Sometimes I have to go back to my room and get some rest. Other people decide that I’m escaping from my problems, and demand that I participate in whatever event was planned. I’m not trying to be anti-social. I will participate when God enables me to do so; but at the same time, when God tells me to rest, I must rest despite what the [retreat] ‘timetable’ states.” As a retreat planner you can help this by posting the retreat’s schedule at least a week before the event on the 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
If they don’t want to participate in the relay race of dressing in costumes, let them do their own thing. Debbie, who lives with chronic fatigue syndrome says, “Unfortunately, I’ve yet to find a retreat planner who understands that I do not participate–not because I’m being uncooperative, shy or anti-social–but because I simply cannot physically do so; the result is that I don’t attend church retreats.”
4. Don’t gasp at all they pack
All women have necessities they pack to make their weekend more comfortable. For the chronically ill these typically include: their own bedding, chair cushions, pillows, snacks, pain patches, eye shades to sleep, or a flashlight and book to read in case she is awake all night. They may bring bottled water, the biggest collection of medication you’ve ever seen (don’t comment), and perhaps even a service dog (which she should ask you about before the event.)
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 may be insisting that she have the bottom bunk bed and then pull out her own mattress, but it’s not because she is the Princess and the Pea. She may have some needs that are medical requirements. For example, electricity in her room is necessary if she uses something like a CCAP machine for sleep apnea. (Out of 20 women surveyed, 2 used this). Her medications may also need to be refrigerated and an ice pack won’t do the job, so she may need access to the retreat center kitchen or a staff member. Sheryl, who lives with chronic myofascial pain says, “Make sure there are always chairs available for those who can’t stand more than a couple of minutes.” You may not see a cane or walker, but her feet, knees or balance may not be able to take more than a couple of minutes standing.
7. Realize that she may not want others to know about her illness
Marjorie says, “When an explanation is given in confidence, don’t react so that everyone present knows that I have a problem,” and Anjuli, who has congenital myopathy (a form of Muscular Dystrophy) agrees. “Don’t single me out!”
8. Have scholarships available
Chronic illness is very expensive and most of these women are on an extremely limited budget. Rarely will they ask for financial help to attend a church retreat, however, because they assume someone must need it more than them. Quietly let them know scholarships are available.
9. Put someone in charge of overseeing the needs of the chronically ill
The best person to choose may be your “healthiest” volunteer who has a chronic illness yourself, or a cancer survivor. This person would communicate with those who are attending and do the best they can to meet their needs and concerns. The women who responded to the Rest Ministries’ survey still attend church retreats and typically approach the planner of the retreat before the event and discussed their health issues. But dozens of others who would like to attend simply assume that the church is unable to accommodate their needs, and they never ask if they might attend. Try to reach out to the women who assume they are unable to go. One way may be by putting a special line on your promotional flyer that says, “Do you live with chronic illness? Ask us about our special accommodations! We would love to see you there!”
Those who live with chronic illness are one of the most valuable gifts in our church that we often overlook. September 8-14, 2008 is National Invisible Chronic Illness Awareness Week, sponsored by Rest Ministries, and it’s the perfect time to take a second look at your ministry’s priorities and who is missing out on being served. Don’t forget that the joy in the Lord many ill people have is also contagious and your church is missing out on their influence. Get them involved today. In time, one of them may be your next retreat speaker.