In Our Own Words

An online friend put together a survey about church experiences. It was open to anyone, but was widely circulated among people with chemical sensitivities, and many of the responses reflect that. Of the people who said it was difficult for them to attend church, 78% mentioned fragrance and chemical exposures as significant barriers. Many people also mentioned mold, and some mentioned electromagnetic fields. There’s plenty to say about the survey, but I think I’ll just let people speak for themselves.

Encouragingly, the news wasn’t all bad. There were a few notable and hopeful success stories. Respondents said this about their churches:

They avoid cleaning the room where our low fragrance Bible study meets on our meeting day.

They made a section designated for people who are sensitive to fragrances. Although, it did not work for everyone since people have different levels of sensitivity.

They have posted a notice in the bulletin.

The congregation uses fragrance-free soaps and cleaning products. So glad I can attend. Had to quit for three years when our former church was too perfumy.

My favorite two responses, by far, were these:

We are made to feel welcome and treated like all the other members. We know we are very blessed to attend such a kind and caring church! Our church board wanted to know about our chemical sensitivities and asked what they could do to help us be able to attend. Then they did it!

Our church, though poor, renovated the building to provide a safe room with MCS safe materials and filtration that will allow any MCS folk to attend.

As hopeful as those responses are, they don’t reflect the experience of the majority of respondents. The person who shared one of the success stories added this:

P. S. Our former church did NOT treat us with respect. They always treated us like we were a bother and sprayed the church with pesticide behind our back. (Of course, our bodies knew.) This church cared more about its "public image" than it did the health of its members.

Here’s a sampling of typical experiences.

I have requested a roped off area where it would be a perfume free zone. The pastor promised to look into it, but after that wouldn't return my calls.

I asked for help several times, and got poor response.

I was brought communion twice, but since then nothing.

They don't return my emails or phone calls. Nobody ever called to see why we stopped coming or offered to visit me at home either.

The church as an entity has been rather unaccommodating, refusing to change cleaning products or ask members to forego fragrance for services.

They put me on a prayer list in the bulletin. Then after learning of my details, they forgot me.

A few people pray for me when asked. I have no access to fellowship or Bible study of any kind.

Since I got sick and cannot attend we cannot get them to return emails or phone calls.

The church for a while had "fragrance free" labels for the first two rows. They didn't continue it for long.

Virtually no access is provided to me from any local churches.

Many people mentioned how involved they had once been.

The isolation after being a very active volunteer is bizarre. To think I once participated in volunteer services 4-6 days a week, tithed 10% and promised 10% for church development costs, to be forgotten. My children question my faith. The church never hesitated to ask for my service but once I became disabled, I'm out. I will continue to remind my kids that the Lord has not forgotten me. That he is not the church.

Others mentioned how much they would still like to be involved.

My best fellowship in the past has been in home Bible studies, meeting in someone else's relatively low toxic home. In the past I have taught those, and I really miss that now. But how am I supposed to find other women who need a fragrance free Bible study/prayer group when neither they nor I can come to church?

Anger and hurt came through in many of the responses.

I have never come to terms with not being able to attend church or the total lack of understanding or concern. I was taught you should never do anything that would prevent someone else from coming to church and I feel that wearing fragrance falls into this category.

I'm disheartened that the only thing keeping me out of church are the fragrances of people and cleaners. There are so many fragrance-free cleaners and soaps on the market. And I don't understand why people can't leave off their scents just one day a week so another believer could have access to church. It seems so selfish and uncaring that folks would rather keep me from church than to give up fragrance for three hours a week.

There is a huge population group that is unchurched simply because the people in the church deem their right to wear perfume/cologne more important than for others to be able to fellowship. It's very sad how selfish the church can be.

I'd like my beloved (now former) church board to encourage listening and learning about things they don't understand rather than dismissing them as "unbelievable" or "made up." Chemical injury is real. And it's not that rare.

Sometimes people just give up.

We know we're a challenge so generally we just disappear.

I am no longer interested in church.

Others still long to be part of a church and long to see churches take leadership on toxicity issues. Here’s what people have to say:

[We] desperately want church access and fellowship.

Fragrance and cleaning chemicals are everywhere. There must be a better way.

The church could do a wonderful service by educating their members.

I would ask that churches all over the world would educate members about chemical sensitivities so that people with MCS could attend without suffering consequences.

The MCS life is hard. We need support and Christian fellowship. Please hear us. Please see us. Please make a place for us.

NOTE: This was originally written as a blog post. Following are excerpts from comments written at the time.

JB said:

I often listen to Joni Eareckson Tada’s radio broadcasts. Interestingly, this morning, she put out a request for listeners to mail in cards with encouraging Bible verses, poems or other inspirational writing which will be sent out to folks with disabilities for Valentine’s Day. I think that is a nice gesture, to remind those struggling with disabilities that they’re not forgotten.

But those of us with MCS *are* often forgotten simply because we’re not visible. We don’t attend church; we don’t attend family gatherings, weddings, funerals and other events. We don’t belong to care groups or serve in the church, as much as we’d love to use our spiritual gifts to build up the body of Christ. Plus it’s equally challenging for people to connect with us in our space (i.e. our homes).

Partly out of my need to connect with people outside of my home, I’ve been conversing with atheists, skeptics and agnostics on an online apologetics comment board for a little over a year, and amidst the vast range of objections to the Christian faith, the question, “Where is God in the midst of tragedy, disaster, pain and suffering?” is one that is regularly asked. The objection is that *if* there is a God, surely he would step in to prevent the tragedies that leave people disabled or the disasters that leave people homeless.

One response I’ve given on occasion is that the church is God’s hands and feet in times of tragedy. Christians are willing to get their hands dirty, so to speak, to care for those who are suffering and grieving. They give their time and resources to help those in need and so demonstrate the love of God to those who are suffering.

But lately I’ve been struggling to support my argument because in my case (and I would submit in the case of many other people with disabilities and/or *chronic* health problems), the evidence is not forthcoming.

At this point, I always feel too ill to even think about attending church, but my husband still goes every two or three weeks just to stay connected with a few people in our church. Truth be told, I feel forgotten. No phone calls. No cards anymore (they came in the past when my problem was considered more ‘acute’). And no offers to visit any longer (visits have always been nigh impossible!).

Thinking of Joni’s request this morning, I’ve pondered letting her staff know that there’s another group of disabled folks out here, those of us with MCS, who sure could use some encouragement on Valentine’s Day (or any day, for that matter!).

MM said:

For many years my default reaction to criticism of the church was to defend it, but that's no longer my tendency. I can still love the church and I can celebrate the things it does well. I can also forgive those in a position to include us who don't make the effort. What I can't do is make excuses, especially to people whose only concept of God is what they see from the churches around them. I find it more helpful at this point to simply say, "Yes, the church should do better and I think God feels the same way." I echo the sentiments of the survey responder who said "I will continue to remind [others] that the Lord has not forgotten me. That he is not the church."

DP said:

My church as far as building and leadership are accommodating me and my MCS but the members even if stop wearing perfume, often have fragrances from laundry products and personal care items on them. They have converted all the cleaners used to safe ones I tolerate and lead pastor's wife has switched using to safe fragrance free products in her home so I can come over without impact. My hubby is a part time pastor there too. When we arrived here, they had experience as a body with another women who had attended there with Lyme disease. I have a few understanding fragrance free friends who have made their bodies and homes safe for me.

We do host a fragrance free Life Group in our home each week but there are a couple who still come with laundry smells and I have to air out the house and pay the piper the next day when they attend. My hubby and the elders at our church are looking into ways to better accommodate the chemically sensitive. I know I am greatly blessed.