Choosing community is a lived virtue, a task of great purpose, learned over months and years, not days. So, if this topic overwhelms you, take a deep breath and say a little prayer right now: Lord, open my heart to do what feels overwhelming. Remind me that wherever I go, you go with me. I give my fear to you.
Ok, now that we've all let go a bit (I had to take a nice deep breath myself...), here are some beginning thoughts on choosing community over isolation in chronic illness. Sunday my pastor, Hunter Beaumont, preached on friendship as part of the "Beyond Me" series. It thrilled me when he said, "Whatever the cost of following Jesus, you will gain back in community." This has been my experience, the great reward of the hard work of letting myself be vulnerable with others. I believe the result of following Jesus is necessarily deep and meaningful friendship. When we are united to Christ we begin to be united to his children. Where there once was hostility and apathy are now interest, concern, and compassion. God moves us toward others in love just like he moved toward us in Christ.
But friendship can be a difficult thing to maintain when living with a chronic illness. When sickness strikes our bodies, it is all too easy to live in isolation. Circumstances large and small can keep us from connecting with others. Sometimes I'm physically barely able to leave my apartment for a whole week--my hands are too stiff to grasp the steering wheel, my body's too fatigued to sit up for longer than thirty minutes without feeling nauseated, and the list goes on. Isolation is a consequence of living with a chronic illness. It's going to happen at one point or another. Physical limitations really can keep us from participating in work, meetings, gatherings, and events. And this is something worth grieving and processing.
And yet, while recognizing the natural conditions that can isolate us from others, our hearts still long for connection and desperately need friendship. As Dietrich Bonhoeffer wrote, "...the Christian needs another Christian who speaks God's Word to him. He needs him again and again when he becomes uncertain and discouraged...The Christ in his own heart is weaker than the Christ in the word of his brother; his own heart is uncertain, his brother's is sure." (Life Together, 23) But even knowing our need for encouragement, sickness can make us feel stuck between a rock and a hard place, needing something our bodies seem so limited to achieve. So how can one move forward? How can we achieve the difficult?
Here are two choices I have to make--again and again--to not allow sickness to isolate me from community:
1) Choose Humility: I have to be willing to accept the fact that I am weak. Seriously. I have to accept that I'm living with a broken body and a compromised immune system, and that this is something that can and will discourage me. I have to accept the fact that I am not strong enough to handle having a disease on my own. I'm not. Yes, I like to think of myself as a pretty bad-ass, strong-spirited, courageous little energizer-bunny of a person. But sickness highlights my holistic weakness. Physically--I have to recognize and accept the fact that sometimes I will need help from others cooking meals, driving, carrying bags, opening doors, or rescheduling meetings. Emotionally--I have to accept the reality that being in constant pain makes me irritable, dammit! Dealing with the fact that my spine is degenerating or that disease can affect my heart, lungs, and GI tract is just gonna affect me emotionally. AND THAT IS OK. Spiritually--I have to recognize that living with a disease doesn't sit well with knowing God as a loving Father. I have to square my physical reality with the reality that I am loved by God. I have to accept that it's inherently spiritually exhausting to fight a disease for one's whole life.
2) Choose Honesty: Perhaps the most important choice I have to make in being sick is choosing to continually take the risk of being honest and vulnerable with the people in my life. In order for me to still have friendships and to be an active part of my community while living with this nasty disease I have to be honest about how I'm doing. Now, I don't go telling every person I know about every facet of my disease. (I carefully choose the people I am most vulnerable with--more on this in future posts!) But in order to combat isolation I have to choose to NOT hide the fact that I have a disease. This sucks. I don't want to be known as "Katie Jo--oh, that's the girl who has some joint disease thing." Friends, this is a hard word for us. I know we all struggle with not wanting to share the fact that we're sick. But, I'm telling you, I sincerely believe that living well with chronic illness requires that we be honest and authentic about the facts of our illness with the people in our lives. For me this looks like having some really awkward conversations with friends, or in my small group--letting people know how I am doing, what I am facing, and even how isolated I currently feel. Additionally, I have to be willing to educate my circle of friends and family about how to love me well, about what life really looks like with my disease, and what I need from them. Often this means reminding my friends that I mostly just need them to be willing to show up at my home to talk, to be willing to enter the space of ambiguity and awkwardness of not knowing how to respond to my illness.
Every day, in every new flare up, with every new way sickness tries to keep me down I have to choose humility and honesty again. And when I do my work of living in humility and honesty, I gain the reward of friends who truly care and truly want to help shoulder the burden of illness. Jesus really does pay us back in community; we just have to be willing to work for it.