What I'd Like My Church to Understand About Chronic Illness

Last Sunday, my husband and I went to church. We don’t attend as often as I’d like, but when we do go, I always feel a little self-conscious. I have several invisible illnesses, which means you can’t always tell when I’m not doing well. I started thinking that perhaps I can help others to see that they’re not alone, and maybe I can explain what someone with chronic illness might experience so church and staff members can understand a bit more.

We are those people. We sit in the same place nearly every time we attend church. Our seats are pretty close to an exit – and no, this isn’t so we can make a quick escape. There are times when I have a coughing spell, GI issues or just need to walk around, so I find it easier if we sit near an exit. So please don’t think I’m anal when I make a beeline for “our seats;” their locations have been well thought out.

church music

Our church has a great music ministry. We probably sing for about 10 to 15 minutes every Sunday (no, I’ve never actually timed it). In my past life, BS (before sickness), I really enjoyed this. I still enjoy listening, but I’m not able to participate. I can’t stand in one place for more than five minutes, and some days even that is too much. If I do, blood starts pooling in my feet and legs which causes pain, numbness and also for me to become weak and feel faint due to the blood leaving my brain. So I usually stand for a few minutes, then I sit. I don’t normally take my cane or any other mobility device to church, so most people don’t realize I’m chronically ill. I’m sure a few people have wondered why I don’t participate as I look relatively youngish and healthy. Besides not being able to stand, I’m unable to sing for very long (family members might say I’m unable to sing period.) I must really look rude! I can’t sing because I don’t have the energy or breath to do so. We haven’t quite figured out what the cause of that is, but it’s perhaps a symptom of dysautonomia. So, please understand why I don’t participate in this part of worship. It’s not because I don’t want to, it’s because I’m unable to.

I don’t always close my eyes and bow my head to pray. Some days I’m prone to spells of vertigo. These can be set off by a change of position in my head (usually looking down) and/or by me closing my eyes. So, I usually close my eyes ever so slightly but don’t bow my head during prayer. I know there are probably many people who aren’t ill who don’t bow their head, but most do in church and, in the past, I always did. So please don’t think I’m rude when I don’t appear to be praying because nothing could be further from the truth. I can pray in many ways.

I’m not always real social before or after church. In fact, I may come across as being rude. It sometimes takes me a great deal of effort to get ready for church and I may not have slept well the night before or I may be in a lot of pain. Any number of things can cause me to retreat into myself. I’m normally a pretty social person, but when I’m having a bad day, I tend to steer clear of people. I may not get up and shake hands during greeting time during the service, I may take another exit out of the church to avoid the crowd and I may spend more time than needed in the restroom waiting for the lobby to clear. So please understand: it’s not you, it’s me. It’s my way of coping with all of my many symptoms in the way I know best.

My church attendance may be sporadic. This includes both church services and other church-related groups or activities. You may see me out somewhere on a Saturday night, but come Sunday morning, I’m too sick to go to church. My symptoms can change that fast. I am so grateful that we have an option to watch services live online every Sunday. No, it’s not the same as being there, but it does help me to feel as if I’m still a part of my church. I’ve joined a study group that meets on Friday mornings; I’ve missed several times because of not feeling well. I feel bad about my poor attendance because I worry that other members of the group will think I’m not taking it seriously enough and that I may be taking the spot of someone who could attend more regularly. So please know that I do want to be there and that I need to be a part of a group.

thinking of you

The other day, I got a very nice card in the mail from my church’s women’s group. The card really did cheer me up on what was a very difficult day. So often those of us with chronic illnesses feel left out. There are meal trains, greeting cards and visitation ministries for those who have been hospitalized, had surgery or had a baby, but those of us in this category of always-being-ill aren’t always remembered. Of course, that’s not always the case, but from my reading and conversations with others who are chronically ill, it happens more than it probably should. So please remember those of us with chronic illnesses – a card, a phone call and/or a meal would be so appreciated.

I hope I have helped some of you to feel understood and helped others with understanding. The support and understanding of the church is so important to believers who have a chronic illness. For many of us, it’s the one place where heartache meets hope and where those who worship with us can really make a difference in our lives.

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