DisabilityMobility.com

I was twenty-four years old, enthusiastically living in new city, finding my independence, careers, and following my heart when I became disabled in a period days and was eventually diagnosed with rheumatoid arthritis. It only took about four weeks, but with two visits to doctors a week, explaining my significant pain, it felt much longer. Eventually I found a wonderful doctor of internal medicine who asked me about fifty questions. In about two days I had a diagnosis.

As with many people, having specific terms like "chronic" and "forever" attached to a painful condition can simultaneously create emotions of fear and relief. At least something describes the chronic pain. There were not many friends, however, that understood or participated in my enthusiasm for a diagnosis. And the office managers at my place of work were not concerned about my pain level, but rather about when I would be able to get back into some heels to keep the office looking professional.

They quickly flung the words, "You're too young to feel so bad!" They always confused rheumatoid arthritis as being related to typical arthritis their grandmothers suffered from, exclaiming, "You can't have arthritis yet." Some tried to sympathize, comparing my fatigued body to a sports injury they had dealt with. "Oh yeah, I have some arthritis on my knee from football. It's not fun, but you just have to push through the pain." Oftentimes, the comments were accompanied by the wave of a hand or the rolling eyes.

A diagnosis in your twenties throws off all the typical decisions one is making. Your twenties should be about deciding on an education, a career, relationships, and where you will live. Suddenly, most of these choices are put on hold. Instead decisions are about how you accept (or do not) accept the diagnosis, what medications to take, what the risk of side effects are worth it, and how to locate the right doctor. We learn how to decipher lab results, what alternative treatments to try and when to have a good cry versus when to just bite your lip.

I did my best to make well thought out decisions, each of them based on thorough research, some instinct, and of course, "worse case scenario" situations. So when I heard someone flippantly tell me, "You're too young to be diagnosed with that illness" it felt like a slap to my intelligence. I recognized it as a passing ignorant comment, but it it my heart deep anyway. Did they assume that I was ignorant or that I too easily accepted the doctor's diagnosis? They comments implied that I wasn't being assertive enough and that I needed to go back to the doctor to get the "real" diagnosis (of an illness that could be cured in a few weeks with just a pill.) I couldn't really be that sick, after all, because I "looked so good."

Laurie Edwards, a woman who grew up with a chronic illness as a child is the author of 'Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties,' In her book she explains, "However infuriating and irrational such comments are, they only have the power to define or validate our conditions if we allow that to happen. There are all sorts of reasons why people find it easy to scorn or deny illness, especially in younger people who 'should' look and act healthy - fear, ignorance, intolerance, to name some."

The ambush of advertising for prescription medicines has given the general public a small education on the fact that illnesses like rheumatoid arthritis and fibromyalgia are legitimate diseases. However, with this education, comes the feeling that everyone is an expert and their assumptions about various diseases are now based on what one sees in those same commercials. For example, people with disabling illnesses can somehow be miraculously playing tennis or doing a marathon. While it's true that a very small percentage of people may go into remission, or those just diagnosed may have favorable results, most of us are happy if we can get out of bed, get dressed and drive a car. These commercials neglect to inform people that though an illness can be controlled somewhat, the person may still be in significant daily pain.

With each chronic illness, most of which are invisible, people will doubt that your illnesses impacts your life as significantly as it does. If you are in your twenties or thirties, they will be even less likely to understand that feeling better requires much more than a good attitude or a little bit of exercise.

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 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.

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. 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 lives with a malignant brain tumor and uterine cancer. She says, "I don't attend retreats because people don't want to understand or accept that sometimes I have to retreat from the 'retreat.' I may have to go back to my room to rest. Others decide that I'm escaping from my problems. 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 at the same time, when God tells me to rest, I must rest despite what the [retreat] 'timetable' states." One way a retreat director can help rectify this is by distributing the retreat's event schedule a week or so before the event, even if it's just posted 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. Avoid gasping when you see how much 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. Remember that she knows her body better than you do, and she is trying to plan for the best experience

Riding on the bus with everyone else, for example, may put her in a great deal of pain the entire weekend. So if she requests a ride in a car with a staff member, make that accommodation. If she puts on a headset to listen to music, don't take it personally that she isn't talking. She may need to rejuvenate so that she is able to socialize that evening. She also may need to eat. If she is diabetic, she will likely need to eat small snacks and meals throughout the weekend. Don't tell her, "Dinner it is in just thirty minutes, so please wait so you can eat with us."

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. Respect her privacy

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

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

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 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.