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, the largest Christian organization that serves the chronically ill, took a survey about attending retreats. Out of the twenty respondents, seventeen participate less since they have a chronic illness. When asked why, the responses were as follows:
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 could you encourage these women to get involved again in your church retreat?
1. When deciding upon your retreat location, ask a lot of questions about the center and promote the fact that you have this information before people even 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. While you are deciding events such as ice-breakers or fun games, make sure there is something that those with physical limitations can participate in 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 when you see all the stuff she has packed
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. Though you have good intentions with your suggestions, remember that she knows her body better than you do, and she's trying 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. Acknowledge that she's not a prima donna; take her requests seriously
While she may insist that she get the bottom bunk bed and then pull out her own mattress and pillows, it's not because she thinks she is the Princess and the Pea. Some of her needs are likely medical requirements. One example is having electricity in the rooms for people who use something such as the CCAP machine which treats sleep apnea. (Out of 20 women surveyed, 2 of them were required to use one). She may also have medications that need to be refrigerated, and an ice pack won't keep it cold enough. So she may need access to a staff member who can get into the retreat center kitchen. Sheryl, lives with chronic myofascial pain, and she says, "Make sure there are always chairs available for those who can't stand more than a couple of minutes." Although it's unlikely you will be able to see the person's chronic pain, she may not be able to stand more than a couple minutes comfortably.
7. Allow her to keep her illness as private as possible
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. Make 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. Delegate someone to oversee the necessities of your chronically ill attendees
Find your "healthiest" volunteer with a chronic illness, or a cancer survivor, in your women's ministry who would be the staff member to communicate with attendees with chronic illness; one who would try to meet their needs and listen to their concerns. Those who responded to the survey by Rest Ministries still attend retreats and most often contact the retreat director beforehand to talk about health issues they may have. But dozens of other people sit in the benches at church and never consider attending a retreat because they assume it's not a possibility due to their illness. Make a special effort to reach out to women who have a chronic illness by adding an extra line at the bottom of your promotional flyer that says, "Do you live with a chronic illness? We have some special accommodations! We hope you'll make it this year!"
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.