EING MARRIED TO A PERSON WITH A disability is not easy, or so I am told. Sometimes things run really smoothly at our house, and then there are other times. I’ve heard some comments from my husband, Bruce, such as: “Nobody knows what I am going through. Not even you. You’re sick, and you just lie there.”

“Everyone asks how you are doing; nobody ever asks how I am coping with all of this.”

“I’m so tired of sitting by myself in church every week. I wish you would get up and come with me, even if you do feel terrible.”

“I have to do everything in this house all by myself.”

“I feel as though I am responsible for everything, and it is too much for me.”

“Even though you may try to help, I am still responsible, because I never know if you are really going to be able to do it.”

You get the idea. It left me feeling like a burden and as if none of my contributions to the running of the household really counted. As if I were quite worthless. The stench of burning martyr filled the air emanating from one or both of us.

One Sabbath I was crying on the shoulder of my cyberchurch buddies. The nearest well-spouse support group is more than two hours away, and Bruce would never go. I am the social animal of the family.

For two years several of us with various disabilities that kept us home had Sabbath school each Sabbath morning. We had met online on the Adventist Forum (before it ended), visited, and had a discussion of the Sabbath school lesson. Our groups grew so much that we had cyberchurch twice each Sabbath, one at 11:00 a.m. on the East Coast and at 11:00 a.m. on the West Coast. Both groups were lively and fun to meet with. We each had a core group of members, with many drop-ins, visitors, and various under-the-weather members with anything ranging from flu or mononucleosis to those recovering from surgery. We also had a contingent of Sabbath evening picnickers from Europe and an occasional insomniac from “down under.”

Until then I really thought the frustrations between Bruce and me were something that only we were experiencing. Denise’s answer made me stop and think. She, as one of my cyberchurch buddies, said, “I wish he could talk to my husband. He says the same things!”

Three of us got together and asked our husbands to meet online to chat one night. We knew that it could end up being a huge gripe session, but even if it was, we felt it would be good for them to get it out of their systems together, instead of saying it to us! We set up a time, convinced our husbands it would be fun, and then stayed out of their way as they logged on and chatted with each other.

To our surprise, it was not anything we expected. They formed a strong bond, and agreed to meet every Friday evening at 9:00. They invited other husbands of women with a disability as they met them on the Adventist Forum. While it is a support group in a sense, their conversations are not limited to “how the girls are doing this week,” though that is something they often discuss.

It is so good to be able to talk about what is happening at home, and have people understand what you are talking about.

“Oh, yes. My wife takes that medication too. Just make sure there is a clear path to the bathroom and don’t get in her way!”

“You’ll come to expect that. My wife never sleeps at night when they increase her doses either.”

“Soaking her in a tub of hot water will help that.”

“Try taking a back scratcher and fixing the scratching end to . . .”

When one of them has annoyed his wife, he admits that he is in the doghouse. The others chip in with helpful advice, such as “You ought to get carpet and air-conditioning in that little house. If we have to be in here this often, it might as well be comfy.”

“Yeah, plug in your microwave and have some popcorn, and maybe by the time you are through munching it, things will look better.”

The group members also have supported each other through some of life’s other difficulties. It gave one member someone to share his fears with as the layoffs swept through his company in waves, each one more devastating than the last. They supported another member as he struggled with Sabbath issues at his job. Many church members might be willing to do that, but it really helped talking with others who knew what a toll a sick wife takes on the budget, and how important that job and health insurance really is. Another member talks about some of the joys, and joyless events, of living with teenagers. There are occasional active discussions of the Sabbath school lesson, since most of them have been studying it to teach on Sabbath.

A computer breakdown usually results in a phone call cross-country to make sure the missing people are OK.

They share serious times, too. One summer, when I was in a medical crisis, all of our online friends (in prayer in their own homes) joined the group who met in my home for anointing and prayer. Later Marian and Kerry needed the same support. It is so good to know that though they are on the other side of the continent, and though we’ve never actually met each other, we have friends who love us and pray for us right along with our local church friends.

Much of the time is spent chatting and joking. Everyone’s sense of humor is alive and well. They choose to laugh instead of cry about their adapted lives. They remind each other not to forget such things as Valentine’s Day. Most of all, they are friends.

The guys’ group met on Friday evenings for over a year, and then moved to a more convenient time on Saturday nights. The demise of the Adventist Forum coincided with the death of one of our core Sabbath morning members, the remission of symptoms in two of us, who started attending church occasionally when we were able, and the end of the marriage of one of our couples. As a result, the Sabbath morning group stopped meeting, but the husbands’ group stuck together. Now, five years later, the guys’ group is still meeting on Saturday nights with two of the original group.  I feel that the guys’ group has been as much a spiritual and psychological blessing to them as the Sabbath morning cyberchurch was to me. Marian and I compared notes and have noticed less family stress and a definite decrease in the number of “smoldering martyr” events.

It seems so hard for men to make supportive friendships, and yet they need them as badly as we do. It helps to know they are not the only one in this situation, and the frustrations that they feel are normal and felt by other men in the same situation. They are guys who love their wives in sickness and in health, and sometimes need a little help from their friends to do that.

These are the kinds of burden bearing and support that many healthy families receive from their local churches. With specialized problems such as ours, there aren’t always people in our local circles who can relate to our lives. Our modem, the Adventist Forum (while it existed), and the World Wide Web have made it possible for us to meet with others with the same issues as ours all across the country.

For the guys and their spouses, it’s just one more way the Adventist Church is meeting the needs of its members.

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Sally Dillon is a mother and a freelance writer who lives with her husband and family in New Market, Virginia. Lupus is a disease of ups and downs, and she is not as seriously ill now as she was at the time this article was written. Time, adjustment, and the support of good friends have made coping with this lifestyle much less stressful now than then. Sally and Bruce are supplying emotional support to other families who have a member with a disability. Should you wish to contact them, use (for Bruce) bruce.dillon@nextel.com or (for Sally)godspen1@yahoo.com.