Friday, August 22, 2008

Planning a Women's Retreat so Those with Chronic Illness Can Come

ARTICLE: Planning a Women's Retreat so Those with Chronic Illness Can Come
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Planning a Women's Retreat so Those with Chronic Illness Can Come

by Lisa Copen

Nearly 1 in 2 people in the USA have a chronic illness and about 96% of it invisible. Are these women attending your church retreats? Many of them are suffering silently, depressed, isolated, and feeling very alone. Others are some of the wisest, calming, most spiritually beautiful women who will touch attendees at your retreat in ways no planned speaker can. 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 planning the retreat ask a lot of questions about the retreat center and promote that you have this information before people register

For example, are the hills steep? Are there "golf carts" available? Exactly how far are the rooms from the main building? Is electricity in the rooms? Are only bunk beds available? Are there chairs other than just metal folding chairs? Elevators? One women explains, "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." People with illness look for retreat centers held in locations where there is little walking involved and preferably the ground is flat. Large homes or hotels are also good. It's easy for a retreat director to assume that fifty yards is a "short walking distance." But fifty steps may be the limit for some people. So provide actual distances on your promotional flyers, not just "rooms are within a short walking distance."

2. Realize that women with illness have a great desire to go on retreats and get to know others, but they also will be on their own schedule at times. Don't take it personally.

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 events such as ice breakers or fun games, remember to have something for those with physical limitations to participate in if they wish

You may ask those with chronic illness what their preference would be. Many are happy just to cheer on their team, rather than participate in the actual race where everyone dresses up in costumes. Debbie, who lives with chronic fatigue syndrome shares, "Unfortunately, I have not been able to find any retreat planners who understand that I am unable to participate, not because I'm uncooperative, shy, or antisocial, but rather because I cannot physically do so; the result is that I do not attend church retreats any longer."

4. Avoid gasping when you see how much stuff she has packed

All women may have necessities that they pack to make their weekend more comfortable. But for those with chronic illness this may also include: different forms of bedding, cushions for chairs, special pillows, dozens of snacks, pain patches, shades to sleep, and a flashlight and a book to read if they can't sleep. They may bring special water, the biggest pill box of medication you've ever seen (don't comment), and maybe even a service dog (which she should have spoken to you about in advance).

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 isn't asking for the bottom bunk and bringing her bedding because she is the Princess and the Pea. She may have some required needs. For example, electricity is a medical requirement, not a wish, for women who use a CCAP machine for sleep apnea (2 women out of our responses of 20 use one). Refrigeration of medications may also be necessary, so don't tell her to just find an ice pack for her room. Her medication could be ruined so she may need access to a staff member who can get into the kitchen. Sheryl, who has chronic myofascial pain reminds us, "Make sure there are always chairs available for those who can't stand more than a couple of minutes." Don't assume just because you don't see a cane, means she is fine.

7. Realize that she may not want others to know about her illness

Anjuli, who has congenital myopathy (a form of Muscular Dystrophy) says, "Don't single me out!" and Marjorie agrees. "When an explanation is given in confidence, don't respond so much that everyone knows that I have a problem."

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. Assign a person in charge of overseeing the necessities of those with chronic illness

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 valuable gifts in our church that we often overlook is the wisdom and joy of those who live with chronic illness and oftentimes daily pain, and love God anyways. September 8-14 is National Invisible Chronic Illness Awareness Week, sponsored by Rest Ministries. It's a perfect opportunity to take a second look at your ministry's priorities and discover who is not being served who could use your encouragement. And don't forget to also include the chronically ill because the church is missing out on their joy in the Lord, despite their suffering. Get them involved in a retreat soon! One of them may just be your next speaker.


Get a free download of 200 Ways to Encourage a Chronically Ill Friend from "Beyond Casseroles" by Lisa Copen when you subscribe to HopeNotes invisible illness ezine at Rest Ministries. Lisa is the founder of Invisible Illness Awareness

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