To the Friends of those with Chronic Illnesses: You are a Gift

I’m convinced that authentic soul friendship is hard thing to do at any age and in any season. 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 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. First Aid Kit describes the yearning for this type of beauty to stay constant in their title track “Stay Gold”:

But just as the moon it shines straight
So dawn goes down today
No gold can stay
No gold can stay

What if our hard work ends in despair?
What if the road won’t take me there?
Oh, I wish, for once, we could stay gold

What 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
— First Aid Kit, "Stay Gold"

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. 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:

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 someone 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 shared 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. 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. 

@@We have to be more comfortable w discomfort in the presence of chronic illness in friendship.@@

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. 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 that it’s hard for my friends to see me as sick and to offer help that they know I would rather not receive because of my own stubborn pride. It’s easy for those in the chronic illness community to focus on how difficult our experience is. But, friends, hear that I know this is hard, humbling, and heartbreaking for you, too. 

On Unpredictability:

If you are reading this, you probably already know that being a friend 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 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% 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 begin to soak up the joy of the present moments when you are able to be outside, work, or spend time with a friend. I think the posture of immediacy my disease has forced into my soul is a gift I bring my friends. Bess shared the thing she loves most about being a friend to someone with a chronic illness is the push to be present, to 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, of holiness, of truth lived out through the dark places of life. Your faithful friendship helps me know that God will faithfully raise me out of this body touched by sickness. Friends, in knowing you I better know the love of the God who created us, of the victory of Christ’s love that conquers sickness and death in resurrection. You teach me to hope, to love, and to just be. Friends, please know that you are a treasure and gift in my life.    

Isolation Sucks: Teach Your Friends to Support You in Autoimmune Disease

Today is World Autoimmune Arthritis Day--a chance to raise awareness for how autoimmune arthritis affects the lives of millions of patients worldwide, including their friendships. Have you lost friends since getting sick with your autoimmune disease? Do you find yourself lonely as you face daily pain, fatigue, and disability? Yeah, me too...

When autoimmune disease often keeps you stuck in bed, on the couch, or unable to do much after you spend all your energy at work, it’s easy to feel like building and maintaining friendships are impossible tasks. I know my friends get sick of how often I cancel our plans. It’s been happening for seven years… And chronic illness is so taboo in our culture. Everyone lives as though people should just get well like you recover from a cold or the Flu. But with diseases like ours (Ankylosing Spondylitis, Lupus, Rheumatoid Arthritis, and Chronic Fatigue Syndrome, to name a few!), we often don’t get well. We keep struggling with daily pain and our bodies often keep degenerating in their slow, excruciating march toward death. Frankly, you and I are visual reminders to the people in our lives that they too are not in control of their health or future. The fact that we are sick makes both us and others uncomfortable! 

In the seven years I’ve dealt with autoimmune arthritis I have seen countless others decide to relegate their disease to a dark corner of their life. It’s a place only they themselves and maybe one other person can visit.

And I get it.

Let’s be honest, it is often embarrassing to be sick and let others see us this way. It’s uncomfortable for me to allow others to see me hunched over, shuffling across my school campus like a 90 year old (I’m 27); or doubled over in pain from chronic diarrhea. Or running to the bathroom every hour from persistent nausea. Or just mentally fried from being in so much damn pain. The invisible reality we carry often keeps us from engaging with others who are well. 

But what if it didn’t have to? What if we could still have friends? What if you could take your illness out of a dark corner and let a friend tenderly bear your pain with you? 

Friends, I believe friendship in the presence of chronic illness is possible and that our joy in life depends on it. You were never meant to carry this burden alone.

@@You were never meant to carry this burden alone. Friendship w chronic illness is possible.@@

I’ll be the first to tell you that letting others into my pain is scary. Letting someone see me bawling over not being able to walk across the room or how I hate what steroids have done to my body is pretty much the definition of vulnerable. Finding friends who are safe to invite into our vulnerable spaces is hard and courageous work. But it’s also been the most meaningful work of my life with the highest pay-off in peace and joy.

How can you move away from isolation and toward community when you have a chronic illness?

  1. Accept the fact that no one else can fully understand what it’s like to be uniquely you with your distinctive experience of illness. We each have our own story, and even others who are chronically ill might not totally “get” your experience. Owning that your experience and life are yours alone can free you from expecting others to understand something they simply can’t and won’t.
  2. Refute the lie that no one else can meet your needs for intimacy or friendship in your sickness. It’s so easy to think that since no one can fully understand what you experience, then others won’t be able to support you in that experience. In order to choose friendship, you have to actively discredit the lie that others won’t be able to support you like you really need. It’s often not that others can’t support us, it’s that they don’t know how!
  3. Begin (and keep!) teaching your friends how to support you in your illness. Others typically won’t know how to support you without your help. I know, it feels like others should just know how to be there for you. They don’t. They feel confused about how to be our friends. They feel helpless and frustrated not knowing how to interact with us in our sickness. 

So how do you teach your friends to support you? Some ideas:

  • Talk about your disease with your friends (or potential friends). Share with them what it is, how it affects your body, and how you are afraid it might impact your ability to be a friend and have friends. Let them know it’s ok if they ask you questions about your disease.
  • Be honest when your illness prevents you from keeping plans. Start letting friends know when you’re actually too fatigued to go out for drinks instead of just saying you can’t or that your plans changed. Let your friends know if you want to be part of their plans but fear that the get-together is going to be too difficult on your joints. Talk about how you can update the plans so you can be included. Be up-front about understanding that you won’t always be able to be included and that you’re ok with it.
  • Remind your friends that you really do want to spend time with them. When you hole up in your apartment during a flare-up: to you it feels like survival; to your friends it can feel like being ignored. Tell your friends that you value spending time with them and are sad when you can’t.
  • Tell your friends when you are super sick. It’s so simple it sounds dumb, but we get so used to being sick that we forget to tell others when things are rough. Try to tell your friends when you are extra sick or have a difficult medical treatment, test, or appointment coming up. Actually start letting them know when you have an infection or a super bad flare, so they can know what you are going through and that you might be a little AWOL that week.
  • Let your friends see you sometimes when you are really sick. Sometimes we’re just too sick to be with others, and that’s ok. But a lot of other times we just don’t let people come over because we are too embarrassed by our messy dishes, gross symptoms, and lack of energy. A real friend is going to learn how to come over to your place when you are that sick and be ok with your messy place and annoying, un-exercised dogs. But they can’t do it if you don’t first invite them in.

Most importantly, today I hope you hear that pursuing friendship while chronically ill is worth the effort. Doing the things I outlined above is going to feel scary and vulnerable. It’s going to feel uncomfortable for both you and your friends. It’s something you will get better at over time and that you will have to, like me, re-learn in seasons when sickness kicks your ass all over again in new ways. But, always, always, it will be worth your energy. I cannot promise that every person you pursue will respond to you and your illness well. But I can promise you that someone will respond well eventually, that there are people out there who will let you teach them how to support you and be there for you in more beautiful ways than you can imagine today. I can promise you that the courageous work of choosing friendship over isolation in your sickness will pay for itself in more joy than you can imagine. 

So, today, choose friendship. You’ll be happy you did. 

Want to talk more about this subject? Join me today for a live-chat at 5pm EST at the World Autoimmune Arthritis Day Headquarters online.

Are you the friend of someone who is chronically ill? Join me next week as I interview my friends on what it’s like to be a friend to someone with a chronic illness and what they’ve learned in the process.

Two Ways I Choose Community Over Isolation

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.


One of McDowell's lovely and hilarious  Empathy Cards

One of McDowell's lovely and hilarious Empathy Cards

Life's been giving me lemons lately. I've had a series of strange and frustrating health issues over the past four months--a pulmonary embolism (a blood clot in my lung), a bout with pleurisy (think stabbing, aching chest pain and trouble breathing), a long-lasting sinus infection (damn you, immunosuppressant drugs!), and now I'm having gastrointestinal issues...again. (Yeah, GI problems are where writing about health gets intensely personal and embarrassing. At least for me.) I've been pretty sick and my body can't seem to get out of a state of fatigue. And I hate even admitting this. I had gotten used to being a somewhat functional version of myself again. I was enjoying being a full-time graduate student with a wonderful part-time job. Leading a small group with my husband. Doing more than I've been able to at many points in my life S.S. (since sickness). I'm 2/3 of the way through my Master's in Counseling, and fiercely want to graduate in one year like I've been planning to. But my body's not cooperating, and once again I'm finding myself in a place of uncertainty.

Earlier this week I discovered Emily McDowell's empathy cards, a series the artist made after suffering with cancer. In an interview with NPR McDowell shared, "The most difficult thing about my illness was the fact that it was so lonely..." One of the reasons was "friends and family either disappearing because they didn't know what to say or well-intentioned people saying the wrong thing. So one of the most difficult things about being sick was feeling really alienated from everyone that I knew." In periods when my disease is more intense and active, it's pretty easy to feel alienated from friends and even family. Most of my energy ends up being used up by just being sick, leaving little left for pursuing friends or even letting them know I'm struggling. Unless you've experienced it, it's hard to comprehend how incredibly exhausting it is for your body to be attacking itself. But, no matter how difficult it may be, I'm convinced that isolation does not have to be the status quo for those who suffer with chronic illnesses. While relating to friends who are chronically ill might feel awkward (or even frustrating!), it's worth the effort. And, as a follower of Jesus, I think it's a calling and a duty for the body of Christ.

Rejoice with those who rejoice, weep with those who weep.
— Romans 12:15 (ESV)

McDowell's cards give insight into what loving an ailing friend can look like. Even simple statements like, "I've haven't known what to say, but I want you to know I care," mean so much. The people who have supported me (and my husband) the most in my sickness have been the friends who just show up, who face the conscious and subconscious fears of awkwardness and decide to relate to me instead. And it's those friendships that have convinced me that alienation doesn't have to be my experience. It's the friends who have chosen to enter into my world--which sometimes literally means entering into a messy apartment and holding me while I cry--who have taught me how to hope and to live for more in my suffering. The truth is, I need friends. No matter how many years I've been suffering with AS, I'm not going to reach a spot where I've totally mastered taking the blows that it brings.

Anyway, talking about community was not exactly what I thought I needed to write about, but maybe it's what one of you needed to hear. As for my lemons, they really are sour and I'm not sure what to do with them. The coming weeks and months might hold some really unpleasant days, medical tests, and decisions, and I'm not sure I feel like going through this all over again. That's where I'm at. So I'm just letting my lemons be and trusting that God will hold me together while my health and plans feel uncertain.