There are unfortunately pastors believe it is not a high priority for them to understand the challenges of an individual with a chronic illness. But the truth is that how well you understand a chronic illness be the difference between isolation and community.
(Note that for this discussion, we will define a chronic illness as a physical, mental, or emotional condition that is recurring or lasts more than six months.)
My daughter Cindy is autistic and epileptic, so she doesn’t fit any mold for children’s ministry. A few years ago, the children’s pastor of our church told us our daughter didn’t fit the profile of a “normal children’s ministry kid”, so we would need to pull her from that classroom. She also didn’t qualify for the special friends program they had for kid with special needs. Therefore, she would not be welcome in the children’s ministry, and we needed to find a place for her on Sundays on our own.
We were devastated. We liked the pastor, and admired the way the church was changing lives in the community. But if there’s no place for our daughter in that church, then there’s no place for us either. We left that church.
Now we’re in a church that is completely different. Not only are the volunteers thrilled to have Cindy join in the junior high ministry, but they notice when she is missing and ask about her. Beyond that, she even has a chance to serve by working with the toddlers in the children’s ministry as an assistant.
Because the pastors at our current church took the time to learn about our family, we are now ALL accepted and loved, instead of being isolated for not being normal. Stories like my daughter’s are far too common, and they are birthed out of three common myths about our chronic illnesses.
Myth #1: All illnesses are created equal
Even with the same diagnosis, an illness never affects two people the same way. For example, my daughter and my close friend both have a diagnosis of epilepsy, but their seizures are very different.
My daughter has short absent seizures that look like she is just zoning out. My friend has grand mals that bust lips and break teeth. To say both experience the same thing because the label is epilepsy is almost silly.
It’s not only epilepsy that has a varied pattern of symptoms and impacts to a person, but every illness. As a leader in a church, you have the opportunity to model the truth that the specifics of our condition do matter, and it is worth the effort to learn about what’s really happening in our lives.
Myth #2: We are just throwing a pity party to get some sympathy
Sometimes, we are accused of using our illness as a way to draw attention to ourselves. In contrast, we tend to avoid talking about our condition to avoid the awkwardness that often accompanies such conversations.
When we do risk enough to share a piece of our life, it is with some trepidation. We have all lost friendships over this type of honesty, when others decide it is too difficult to maintain a friendship with us.
The best thing a pastor can do when we do start talking about our illness is to lean in, listen without judgment, and ask questions to draw out more of who we are. You will lend us strength and pull us out of the darkness of isolation.
Myth #3: We don’t want to serve in the local church
Unfortunately, another myth that has been promulgated about those of us with chronic illnesses is that don’t want to serve in the church. Admittedly serving can be difficult depending on the details of our condition, but many of us are interested in giving back.
For example, I have a seizure disorder that causes 6’7”, 300 pound me to fall to the ground. Putting me in kids’ ministry is not an option (I might kill a kid), but I am doing several behind-the-scenes jobs during the week to support the church.
Taking the time to determine where and how we can serve in the local body will allow us to feel loved, valued, and accepted.
You Can Make an Enormous Difference
It can be difficult to lead those with chronic illnesses, because we come with a lot of baggage from poor experiences with others. But let’s be honest for just a moment – everyone has baggage.
The good news is that you can change the narrative of our story. Perhaps more than anyone outside of family, the perspective of a pastor carries a great deal of value for those of us with chronic illnesses.
By taking the time to listen as we describe what life is like for us, you validate our journey.
By understanding the risk we take very time we share a little piece of our life with someone, you strengthen us to risk again.
By applying some creativity and compassion to find a way to let us serve, you give us the chance to give back to our community.