When I Asked What It's Like to Be Friends With Someone Who's Chronically Ill
I’m convinced that authentic soul friendship is a hard thing to do at any age and in any season.
In the past couple weeks I interviewed a few of my friends about what it’s like to be a friend to someone with a chronic illness. As I reflected on their words and friendship more generally, I realized that friendship is difficult for all of us humans.
As a chronically ill young woman, it’s easy to think it’s an illness problem. But my hunch is that building and maintaining deep friendships is a task almost all humans struggle with on some level. We were created for connection, but often don’t know how to accomplish what we seek. From their earliest weeks and months, babies recognize the voice of their mother and mimic the facial expressions of the people around them. We are hard-wired for relationship.
But relationship sometimes eludes us. Connection is never quite what we long for. Our moments of deep connection are brilliant but fleeting, moments instead of constants in our lives. The band First Aid Kit describes the yearning for this type of beauty to stay constant in their song “Stay Gold”:
“But just as the moon it shines straight
So dawn goes down today
No gold can stay
No gold can stayWhat if our hard work ends in despair?
What if the road won’t take me there?
Oh, I wish, for once, we could stay goldWhat if to love and be loved’s not enough?
What if I fall and can’t bear to get up?
Oh, I wish, for once, we could stay gold
We could stay gold
We’re like moths to a flame, drawn to the glow of intimacy. But we also know that fire burns. The small pains of friendship and the larger wounds of rejection and abandonment keep us from moving toward one another. The presence of chronic illness in a friendship can make our frustrations, pains and wounds more noticeable. So today, I write for the friends of those with chronic illness, the caregivers, the patient souls who feel simultaneously disappointed by our fickleness and drawn to us in love. The chronic illness community too often gives you a bad rap, focusing on your flaws instead of your love. Not today, my friends. Today, you are my teachers.
So what’s it like to be a friend to someone who is chronically ill?
On acceptance:
My friend Bess shared that the hardest thing about being a friend to someone who is chronically ill has been accepting she is not going to understand what I go through completely. Friends want to understand each other. But there is an element to chronic illness people can never grasp unless they have been chronically ill. Even my husband will never fully understand what my experience is like. This fact can be incredibly isolating for both the sick individual and our friends. However, when both parties in a relationship accept our different experiences for what they are, our differences can become places of respect and cherishing, rather than only frustration and pain. Friends, as a chronically ill woman, I release you from the unfair expectation that you must understand my experience of being sick.
On “fixing” and the discomfort of seeing us sick:
Bess also said it’s been difficult to stop responding to me in “fixing mode.” She said, “Fixing is the opposite of intimacy. It’s harder to be in the pain with someone than to fix it.” Let’s be honest with each other, it’s wildly uncomfortable to see someone you love in pain. I think the urge to fix, to alleviate one’s pain, comes out of this place of discomfort. Friends, we have to become more comfortable with discomfort in order to keep knowing one another in the presence of chronic illness.
Being with a friend who is sick is difficult for both parties, especially when a friend has to accept practical help because of their illness. My friend Michelle and I reminisced about when we were college roommates and I often needed help from her to cut my food, brush my hair and drive across campus or town. She shared, “It’s humbling for both people. By no means is it a chore. But I’ve often thought, do they know this is hard for me, too?” It was good for me to remember it’s hard for my friends to see me sick and to offer help they know I would rather not receive because of my stubborn pride. It’s easy for those in the chronic illness community to focus on how difficult our experience is. But friends, I know this is hard, humbling and heartbreaking for you, too.
On unpredictability:
If you are reading this, you probably already know that being friends with someone with a chronic illness means your friendship can be pretty unpredictable. Some weeks I can spend a lot of time with friends, and other weeks I’m homebound. Canceled plans and grouchy moods can leave my friends feeling like they are relating to a ticking time-bomb. “It’s a push and pull of how I will be received… It takes self-confidence to not think I am being rejected or that I’m not meeting your needs,” Michelle shared. I’ve gathered it takes some thick skin to be a true friend to someone with a chronic illness. Friends have put up with a lot from me — bitchy words said in frustration, unpredictable moods, pushing them away when I’m not doing well and the general flux of my rapidly changing capacity to be together. Friends, sometimes your friend who is chronically ill feels so overshadowed by her physical pain that she can’t respond to you as 100 percent herself. Your friendship helps me keep being me. Your friendship enables me to see past the pain, to remember who Katie Jo is. Let’s keep giving each other grace, because unfortunately, that damn unpredictability isn’t going anywhere.
On the gifts of friendship in the presence of illness:
When you can’t always get out of your bed because of illness, you may begin to soak up the joy of the moments when you are able to be outside, work or spend time with a friend. I think this is a gift I bring my friends. Bess said the thing she loves most about being a friend to someone with a chronic illness is the push to be present and enjoy what’s right here right now. Appreciating the present moment helps us embrace our true selves. Bess paid me what might be the highest compliment of my life: “You push me to accept my true self. I think it’s because you are so often pushed out of your comfort zone because of your chronic illness, and then you push others to do the same. You motivate everyone around you to be more fully themselves.”
That might be part of the rub with your friends who are chronically ill, too. It’s scary to have to face our true selves! The burgeoning and illuminating sense of presence we who are chronically ill bring to our lives can be a bit overwhelming. Our sickness makes us face things about ourselves we would rather not face. And we know it highlights similar facets of your lives as well. Friends, let’s soak up the joy together when we get to share coffee, sit in the sun, walk in a park or simply sit together on a couch. Let’s share the joy of “being” together as we each more fully become who we are.
Ultimately, you are a gift to your friend who is chronically ill.
You are a gift not simply for the help you offer and the comfort you bring. You are gift because of who you are, because in you I see the meaning of love, holiness and truth lived out through the dark places of life. Your faithful friendship helps me believe that God will faithfully raise me out of this body touched by sickness. You teach me to hope, love and just be. Friends, please know you are a treasure and gift in my life.
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Katie Jo Ramsey is a lover of truth and beauty and a resolute seeker of joy. Wife, counseling masters student, writer, passionate reader (truthfully, a nerd), friend and patient. Katie Jo has ankylosing spondylitis and adrenal insufficiency and blogs about finding meaning and hope in both at www.anchorforthesoul.net.
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