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, which is the largest Christian organization that serves the chronically ill, recently did a survey about attending retreats while living with a chronic illness. Out of the 20 respondents, 17 reported that they participated less in retreats since their diagnosis. When asked why the responses were:
Three said, “Accessibility issues (I know I can’t easily get to and from different buildings at the retreat)”; 6 people reported, “The pain factor. It’s just too draining”; 4 responded, “The unpredictable health issues”; and 10 said, “A combination of the above.”
So, how could you encourage women with chronic illness to get 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.’ I may have to go to my room to get some rest. Others decide that I’m escaping from my problems, and they demand that I participate in whatever is happening. I’m not wishing to be anti-social and I will participate when God enables me to do so. But when God tells me to rest, I must rest, despite what the [retreat] ‘timetable’ states.” A schedule of the retreat’s events a week before can be extremely helpful, even if it’s just posted on your church’s web site.
3. When planning ice-breakers or fun games make sure there is something comfortable those with limited physical abilities can do if they choose
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. Despite your best intentions, remember that she knows her body better than you do, and she’s able to plan for her 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. Recognize that she’s not being a prima donna; take her requests in stride
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. Allow her to keep her illness as private as possible
Marjorie says, “When an explanation is given in confidence, avoid reacting so that everyone present knows that I have a problem.” Anjuli, who lives with congenital myopathy (a form of Muscular Dystrophy) agrees. “Don’t single me out!”
8. Have scholarships available
Most people with illness are on a very limited budget. These women, however, are often too proud to ask for financial assistance for something they consider “frivolous”–which it is compared to paying for their monthly medication. Let them know scholarships are available.
9. Put someone in charge of overseeing the needs of the chronically ill
Choose your “healthiest” person with a chronic illness, or a cancer survivor, to communicate with those with illness and listen to their needs and concerns. The women who responded to the survey still do attend retreats and most say they approach the retreat planner ahead of time about their health issues. But for the dozens of others who would like to attend, but assume you are unable to accommodate their needs, they never contact the church. Try to reach the women who assume they are unable to go, by putting a special line on your promotional flyers that say, “Coping with chronic illness? Ask us about our special accommodations! We’d love to have you come!”
One of the most overlooked gifts in our church are those who live with chronic illness or pain. Despite their daily suffering, they have a great deal of wisdom and joy for the Lord. National Invisible Chronic Illness Awareness Week is September 8-14, and is sponsored by Rest Ministries. It’s a wonderful opportunity to look at your ministry’s priorities. Who is not being served who could use your encouragement? And who lives with an illness and is missing out on serving others because they are not connected to the church? Get them involved! One day, one of them may be your retreat speaker.