Monday, October 19, 2009

How Can the Church Minister to the Chronically Ill?

I read an article today that my friend Lisa Samson linked on Facebook. The article addressed the church's failure to minister to the chronically ill. The article is about CFS, Chronic Fatigue Syndrome.

I think I have something to add to the subject. We know all about chronic illness at our house. I have fibromyalgia, and my daughter has catatonic schizophrenia. Additionally, she is on the autistic spectrum, as are two of my other kids. Like I said, we know about chronic illness at our house.

Five years ago I was much more ill than I am right now. I couldn't even make a stir fry without having to rest. I spent most of every day in bed. I thank God for sending me to a doctor who put me on the guaifenesin protocol for the reversal of fibromyalgia/chronic fatigue syndrome (Dr. St. Amand sees them as the same syndrome). Yes, the protocol has vastly improved my life. I still feel the effects of fibro , but I am no longer debilitated. For this I am glad, since I have a sick daughter now.

Chronic illness can really be an invisible issue in Churches, because you show up on Sunday morning with your game face on, and you meet and greet, and perhaps everything seems fine. "Hi how are you?" and you smile and say "Hangin' in there" and no one pauses to ask what "hangin' in there" really means. You don't say you are fine because on some level you aren't. Or if you do say "fine" you are talking about the grace of Jesus and not actually about your suffering body or your tired soul. The social convention has been met. You move on. Nobody sees that you go home on Sunday afternoon and collapse into bed or onto your best comfy chair because you are just. so. tired. and. in. pain.

Nobody sees that your life is limited, that when they are out going to fun places like apple orchards with their kids, you are at home in bed again and your kids are parked in front of yet another video.

Nobody knows that you might not be eating well because you don't have the energy to cook, or even to go to the grocery store.

Many of the effects of chronic illness are hidden from view in the type of community interactions that we call "church" because the effects are happening behind the closed doors of the ill person's home.

So, how can the Church minister to families and/or persons with chronic illness? What are some practical steps that parishes can take to help the chronically ill in their midst? Here are my thoughts:

1. Listening. Do you know someone with a chronic illness? Have you ever sat down and had coffee with him or her? Have you ever let them tell you their story? It is so good for an ill person to have someone to share their thoughts, feelings and struggles with. Most chronic illnesses are not catching. Spend some time. Have a cup of coffee, share a cookie and listen. And not just once. Be a friend and don't abandon the chronically ill to be by themselves. Being chronically ill is very very lonely.

2. Awareness. I touched on earlier about the reality that most parishes are very good at ministering to those in need who are in crisis. I have been on both sides of that reality, both with family funerals, hospitalization, and on helping to organize funeral meals and meals for the acutely sick and families who are welcoming a new baby into their midst. These are the types of situations where people really do step up the the plate. In the case of chronic illness, however, the needs are sometiems similar, but they are on-going. The lack of energy, the infirmity, the extra expenses of medications or doctor's visits, the exhaustion...these go on and on. So how about a ministry where people can sign up to bringing one meal a week or month to a person who is chronically ill? Even one or two meals a week, as a family deals with chronic illness (I'm thinking in particular if it is one of the parents who is ill) can make a difference in that family's stress load.

3. Remember the kids. If a parent is chronically ill, their children are not getting the same fun opportunities that your kids might be getting. Finding ways to let the kids of the chronically ill tag along to those fun things would be a huge blessing. If a sibling in a family is chronically ill, I guarantee you there is an imbalance in who is getting the most attention. This is unavoidable. Remember the young family members of the ill person.

4. A house cleaning ministry. Doesn't have to be often. Parish members could help with a spring cleaning, help with yard work, help with fixit projects. These are things that ARE getting neglected in the life of a person who is chronically ill. Illness puts a person/family in crisis mode, and you are living with MORE on your plate, and LESS energy/resources to deal with that "MORE". Physical, practical help is essential. A Parish could organize a "missions team" to help with the physical upkeep of such a person's home or yard, for instance. Great youth group project.

5. Do not judge. Jesus said that we must take up our cross and follow Him. Sometiems that cross looks like Chronic Fatige Synderome, Fibromyalgia, Dermatomyocitis, or Schizophrenia...among other things and a person's physical or mental health is NOT an indication of a lack of faith. I have several friends who live with chronic illnesses of various types, I live with chronic illnesses of various types and believe me, not judging is HARD. I think this gets back to that listening thing I started out with.

6. Include these friends in your regular prayer list. Faithfully. For a lifetime if necessary.

7. Invite those with chronic illness over and share your hospitality with them, but don't be offended if the visit has be be a short one. Chronic illness often leaves a person feeling like an untouchable.

8. If there are people in your parish who are chronically ill, there are very likely people in your parish with special dietary needs. Plan coffee hours or dinners to include some natural foods such as cut up fruits (without extra added sugar) and vegetables. Such foods are acceptable to almost anyone on most types of special diet: GAPS, Gluten/casein free, diabetics, etc. Be considerate. And pot luck/common meal foods should not include nuts in every dish. There are many many people suffering from food allergies. Label foods for their content at common meals. Be aware of these issues as they pertain to your own parish and the people in them. Often times, chronically ill people are left out of socializing opportunities because the food is off limits to them.

9. When planning a building program, get the input of the ill and specially-abled to plan the lay out of the facility. Is the building handicapped accessible? Are there ramps? Are the doors easy to get to? Are there enough seats (relevant in a pewless Orthodox Church) for the chrocially ill, old, infirm, and visitors? ELt the persons in your parish who have chronic back problems be on the committee that picks the new pews. This can make a huge difference.

10. Remember that as much as we would like everyone's life to be easy and filled with material blessings, for those with chronic illness it just isn't always happening that way. Be sensitive. Chronic illness robs a person/family of vitality, money, the ability to travel, sometimes the ability to care for or pay for their home...many things. Be careful never to equate material things or bodily health with the favor of God.

In a culture that proclaims and lives by the falsehood of "God helps those who help themselves" and that believes we are as healthy as our own lifestyle choices, how we treat the chronically ill who are in our own parishes might be an indicator of our health as a Christian community. I'm not saying that every parish or every individual Christian needs to do all the things I mentioned in this article for every chronically ill person in their midst, but I do offer up this list as a challenge for parishes: Think about the chronically ill in our midst, and find ways that we can remember "the least of these". Jesus said "Whatever you have done unto the least of these my brethren, ye have done unto me" and His list is as simple as the things I offered up here: a meal, a helping hand from time to time, and love.

14 comments:

deb said...

Very good post. You could publish this as a brochure for priests/pastors/parish councils/church women's groups etc. I'm serious.

Have you seen this recent New York Times article on some new developments in understanding CFS?

"Is a Virus the Cause of Fatigue Syndrome?"

http://www.nytimes.com/2009/10/13/health/13fatigue.html?scp=1&sq=chronic%20fatigue%20syndrome&st=cse

Alana said...

And I forgot to even mention supporting the spouse of a chronically ill person (who carries a very heavy load indeed, or pastoral care issues.

Doggie Howser said...

You must be careful with back pain as the consequences can be dangerous so findrxonline indicated in an article on the subject, I suffer from chronic fibromyalgia for a few years ago I had a tug on my lower back and has gotten worse over time, I have visited many doctors and to ease my pain I was prescribed narcotic opioid drug that is like vicodin, oxycontin, lortab that help curb these terrible back pain.

Mimi said...

I agree with Deb, this would be very good as a publication.

Alana said...

Doggie, go to a chiropractor! I have four degenerated discs and arthritis in my back and I have NEVER been on those kinds of pain meds.

deb said...

And another thing! Just thought of this. I think the parish nursing programs that many churches have instituted sound brilliant (though I've never belonged to a church that has a parish nurse). It seems to be happening mostly among Protestant churches? Maybe? But I'm not sure? Anyhow,I wonder if anyone connected to that program would be interested in working with you to publish this article/brochure? I think googling "parish nursing" would yield contacts. And of course, I would think that they'd already have some info/guidelines/etc. about helping parishes minister to those with chronic illnesses -- I'd hope so, anyhow. Maybe they could help you to help churches to get more educated about this. Or you could help them to educate churches. I dunno, just seems possibly productive.

Just a brain drizzle.

Does anyone know of Orthodox churches that have parish nurses?

Marigold said...

I love this post, Alana. Some people and I at my parish have been wondering how to help our priest, who is living with cancer, and his wife. They are such pillars of the parish, and full of joy, but they work so tirelessly, and we worry about them.

Being English, of course, there is a certain measure of 'getting on with things'. So they get on with things, and they're joyful, and we don't know how to help, because they wouldn't want to burden US with admitting a need. It's not always easy to know how to help in a way that doesn't provoke a 'don't pity me!' response. Thanks again for this.

x M.

Xenia Kathryn said...

First, great article, Alana! Is it okay if I send it to the head of my church's 'Comforter's Ministry'? This could be great printed in church bulletins/ newsletters too. Thanks for taking the time to articulate these very real needs.

We have a woman with MS in our parish, and our women's group makes sure a meal is brought to her family once a week. I've only now started to help myself, but I know it's so important and valuable. Now that our church has expanded quite a bit, I can't help but wonder if there are any others who are chronically ill who could be ministered to in the same way (in addition to new moms, those who are recovering from short-term illness and those who've suffered recent deaths of family members, etc.).

Anyways, thanks again!!! Great information.

Has said...

Fabulous article Alana, thank you so much. I also agree it would make a great brochure. I will recommend it to my parish here in Australia.

Can I meekly ask if you might consider writing some similar ideas for a parishioner with mental illness, and their families?

Anonymous said...

Church is a joke for those who have other problems as well. How about those who are depressed (yes folks, life events can overwhelm you even many years later), or those who have suffered abuse (especially if the abuser was from the church). Basically the deal is, just show up with a smile and some money, volunteer and then don't bother us- we certainly won't help you if you have problems and we may even cause some more problems. Priests are the worst. "I have to support my businessmen" Direct quote from Orthodox clergy. Here's what you do- go to church and leave, they don't care if you have breath. From the school of hard knocks- Orthodox edition.

Alana said...

I'm so sorry you've been so hurt, Anonymous.

Caldonia Sun said...

Excellent post. I am finding this out first hand since I have been diagnosed with lyme. People really don't know how to deal with chronic illness. The silence can be deafening.

ragamuffin diva said...

Oh, man, Alana. I know this so well. Thanks for posting.

William said...

Would you be willing to allow me to link to your post? I have a blog devoted to the purpose of gathering Orthodox Christian disability resources (Arms Open Wide) and this is one.
Also, on my resource page, I have a section Orthodox Christian families. May I also include you there?
Lists of ministries and information have their place, but families who deal with disability in their midst incarnate the matter and I consider all of you in that category the very best resources for others in similar boats.
You can contact me at Arms Open Wide or at rdrfrm@gmail.com
Thank you.