chronic pain

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.    

I am Fearfully and Wonderfully Made

I am fearfully and wonderfully made. This has been my mantra this week, a truth I have both relished in and at times been frustrated to believe. I'm just over a month into my diet overhaul, a process that has been hard and somewhat helpful. After several months of feeling very crappy, it was time to refocus on getting healthy. It's still a sobering thought that I needed to stop taking classes in order to get healthier, that I'm sick enough that I really need the diet and lifestyle changes I'm making. There have been a few days during the past month that this reality has been absolutely frustrating. Why can't I just do and eat whatever I want? Knowing I'm fearfully and wonderfully made and also knowing that my body is often full of inflammation is sometimes a confusing tension for my heart to hold.

A few weeks ago I started going back to yoga classes at a studio a few blocks away from our apartment (Kindness Yoga). It has been [overall!] a life-giving experience to be back on the mat. I have done yoga on and off for about 4 years, and every time I start practicing again after a long "time off" I know that there will frustrations and challenges as my joints readjust to the movement and flow of yoga. Part of it is plain and simple being out of shape. But the most challenging part is the pain and stiffness in my spine, wrists, shoulders, and feet as I push to hold the various poses. Going to classes not knowing what your body will be able to handle and pressing into discomfort is not for the faint of heart. Several times during the past few weeks I've thought to myself that going back to yoga is an exercise in courage.

One of the things I love the most about yoga is that it is a mental and physical workout. Lately, yoga truly has been helping me hold the truth that I am fearfully and wonderfully made. As I stretch and move I am simultaneously appreciating what my body can do and facing its limits. Facing physical limits is difficult. Yesterday I felt like a total badass in my yoga class, as I was able to hold every pose with strength and today I battled frustration as my spine and shoulders screamed at the effort of the endless backbends and heart openers the teacher kept leading us in. One day last week I had to leave class halfway through because my joints were hurting so much I was in tears from the sheer pain. Every day my levels of stiffness and ability are different, and I have to be open to what my body needs in each day.

Doing the hard work of caring for my body is a spiritual endeavor. For me, going to yoga is choosing to honor God and the body he gave me. For me, yoga is prayer. It's a humbling expression of my heart's desire for healing and a conversation with both myself and God about the tension of a broken body. My yoga practice is a space where I have to face my heartbreak, frustration, and pride, and where I get to exult in the joy of being human. As I bow in Namaste to my teacher at the end of the class I am honoring the light of God in her, myself, and the others in my class--humans, made in the image of a mysterious, enthralling God. 

Friend, if you are dealing with a disease like me or maybe mental health issues that feel like they are holding you back or overshadowing your purpose, listen: You really are fearfully and wonderfully made. The effort it takes for you to take care of you is worth the pain. You will feel the truth of your purpose and inner beauty again, even if you can't right now.

In the meantime, join me in the courageous work of self-care. It could mean yoga class, starting to see a counselor, or simply meeting a friend for coffee to share how you really are. Whatever it is, as you do it, smile at the fact that you are courageous...because you are fearfully and wonderfully made.

When Pain Makes You Feel Joy--capturing the small opportunities.

This morning has been rough for me physically. Every day I experience "morning stiffness" upon waking up, and some days the stiffness just doesn't go away. Today I had an 8am class, so it was pretty painful to make it to school and sit in a non-padded chair through the three hour lecture. I never know when my morning stiffness is going to last all day, so I often push past the pain and try not to dwell on it, thinking it will likely subside soon. But sometimes it lingers, and the pain can be so intense that it brings small tears to my eyes. Not necessarily because I'm overwhelmingly sad, but because it really hurts. 

Being in intense pain while listening to a lecture is hard work. And I realized this morning that when I recognize the truth that I am sacrificing my personal comfort for the sake of learning to better help others feel the comfort and hope of God's coming Kingdom, great joy enters into my present experience of pain. Though it's sometimes healthier for me to stay home, there are times when I can push through pain. But in either way that I cope, it is imperative that I stay mindful of my experience. When I am mindful in the moment of the fact that it is truly difficult to be a student with chronic pain, I am presented with an opportunity to respect myself and revel in the calling God has put on my life. It's a godward moment, a space in my heart to submit my experience of pain to God knowing that he wants to use it for the good of others. Small moments like these when I'm wincing in pain are sometimes sacred spaces where sadness over my authentically hard experience mingles with the joy of knowing God is working to redeem pain in all its forms--and that I get to help others know this coming redemption. It is by no means an invalidation of my sadness but rather an active and mindful experience of it in the presence of a God who cares about it intimately.

So as I sit here typing and feeling rather woozy, I am smiling inside even as I wince and close my eyes at the world that's beginning to spin around me because of the pain. But I write even now because I so want you to know that joy can enter into our sadness when we let ourselves experience it. It doesn't always. It won't always come. And we don't have to dutifully force ourselves to feel it. But it can come. And It will. I truly believe that a gift of suffering with chronic pain is that through it God often enlarges our capacity to feel joy. You might feel like that is the farthest thing from the truth right now, and I respect you for feeling that. I've felt that way too. But I also long for you to know and experience the truth that God deeply cares about your pain, so much so that he sent his  Son to live in a broken human body, experiencing the worst physical pain imaginable in addition to the existential weight of your and my angst, so that he could redeem it and banish it from the world forever. Jesus knows my pain and your pain and he conquered it. When he comes again, our pain will end forever. And in the meantime, the very Spirit that raised Jesus from the dead can live in our hearts, tenderly helping us face our pain and find joy in and despite it

And that's part of the beauty of these sacred, pain-filled moments--they exist because the Spirit of God lives in me. My pain-filled moments can be invaded by joy because they are an opportunity to commune with the Living God. This is somewhat heady, existential stuff, but it's also the stuff that faith is made of. So, if you have the mental energy, wrestle with it, wrestle with me and with God by reflecting on the following verses:

Jesus...”made himself nothing, taking the form of a servant, being born in the likeness of men. And being found in human form he humbled himself by becoming obedient even to the point of death, even death on a cross.”
— Philippians 2:7-8
“...I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ and be found in him...that I may know him and THE POWER OF HIS RESURRECTION, and may share in his sufferings...[that] I may attain the resurrection from the dead.”
— Philippians 3:8-9a, 10a, 11b
Therefore, my beloved brothers (and sisters), be steadfast, immovable, always abounding in the work of the Lord, knowing that
IN the Lord YOUR LABOR IS NOT IN VAIN.”
— 1 Corinthians 15: 58

In the Lord our laboring in these small, pain-filled moments is not in vain. Sometimes pain can make us feel joy, because in it we can know the suffering love of Jesus and the real power of his resurrection. And, friends, there is no greater joy than beholding the love of God in Christ.

"But I'm in pain!"

Workout Motivation & My Confession of Being Fairly Lousy at Taking Care of My Body

In the past six years that I've had an autoimmune disease I've struggled to maintain a regular work-out regimen. Those of you who have chronic pain probably instantly understand why--it's hard to feel like moving a body that's often screaming in pain. But an inflammatory disease like mine that causes joint pain actually improves with activity instead of rest. It's a constant balance to maintain the rest my fatigued body needs with the exercise it needs to stay mobile and strong.  

Confession: rest usually wins.  

But the longer I am the sick, the more desperately I want to take care of my body. Over the years I've had several great 3-6 month spans where I do yoga 1-2x a day, go on walks weekly, and bike regularly. But with each new extended flare (when my disease attacks a bit more "loudly") I have to find renewed motivation to fight through pain to practice wellness.

I'm in one of those seasons now--where my body's been wrecking havoc for several months, making me spend more time on the couch than in the gym. Chronic illnesses like mine are seasonal in a sense--requiring constant flexibility with the ebbs and flows of pain. I can go from being pretty in-shape to rapidly losing muscle mass in a few pain-filled weeks of a bad flare-up. The vascillating nature of my physical health requires conscious and frequent adjustment and acceptance. 

But I don't want to "accept" my pain so thoroughly that I forget to fight back.

I need to arm my body with the strength to stay mobile and active. So I'm back on the yoga mat and taking biking adventures around town as frequently as possible.

For those of us with chronic illness and pain, we have to carefully discern the state of our bodies. You and I have to become experts of our bodies--knowing when to push through mild or moderate pain and when to ride out a wave of fatigue. Even after 6 years of fighting AS I'm still learning this body-discernment.

But I'm determined to keep fightinglearning, and pushing the boundaries of my disease to have a full, active life. 

Will you fight with me? Comment below on how you've had success or difficulty in taking care of your body with a chronic illness. And share with the button at the bottom of this post on Twitter or Facebook to keep raising awareness and connecting people in pain. We need each other to fight well! #chroniclife #chronicfighter 

Perseverance?

The unassumed is the unhealed
— Gregory of Nazianzus

Hebrews 12 tells us to lay aside every weight, every sin, and run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith. He endured his suffering on the cross because of the joy of the future, knowing his death was creating new life, a new way, a union by which you and I can mysteriously persevere in the continuing, but temporary, darkness of this world. 

PersevereWhat a difficult word. I kind of get tired (...and maybe a tiny bit frustrated) just hearing it! Maybe on my most inspired, holy days I find joy and courage in hearing it. But when I've been battling nausea and fatigue and hard decisions and fear for weeks... It mostly just sounds trite.

Fantastically for our struggling hearts there is more to the reality of perseverance than what we feel on any given day.  Douglas Farrow writes that by his incarnation “God has drawn so near to man and drawn man so near to himself in Jesus that they are perfectly at one." In Jesus' incarnation there is a double movement of grace:

1) Descent--God draws near to man and

2) Ascent--in so doing man is drawn near to God.

This double movement accomplishes a union in which you and I are intimately, inextricably connected to Christ's perfect suffering and victory over sin and death.

What does this mean? The God of the universe took on a human body--he truly experienced life in a broken body like you and I do--and felt the pangs of both a horrifying death and the emotional angst of betrayal and separation from God. In the incarnation Christ penetrated human existence and stands in solidarity with condemned, frail, and broken humankind. Because of this, “Christ’s humanity means that God’s love is now flesh of our flesh and bone of our bone, really one of us and with us." (Christian Kettler) So first, take comfort in the fact that your Lord personally knows the pain of human bodily suffering. While it sometimes feels like we're suffering alone, the truth is we suffer in the company of the God who suffered. Dwell on that fact. Sit with it. Let it become as true in your heart as it is in the Word. 

Friends, the secret of our ability to persevere is that we are united to Christ. Christ's perfect response to suffering--his submission to endure the cross for the joy that was set before him, his obediance to the Father, his tears of blood and even agony, his willingness to be despised, publicly shamed, isolated from and misunderstood by those who were closest to him--Christ's perfect response to suffering is in reality ours.

In union with Christ’s humanity, our faith is intimately grounded in and animated by Christ’s faith. Our faith is forever rooted in Christ's faith. Consequently, "the covenant faithfulness of God surrounds and upholds the faltering response of his people.” (T. F. Torrance) Do you get what this means? God himself in Christ enables you and I to persevere in suffering. The Spirit that raised Jesus from the dead will keep raising us to hope, to endure, to believe, and in the end, to be completely made well. 

So, believer, dwell on the fact that your life is a participation in Christ's life. Our feeble efforts, sleepy prayers, and even cries of frustration are lived in connection to Christ’s perfect offering of faithfulness to the Father. He prays with us and for us, standing before the Father in our stead.

So, I'm tired of being sick. I'm tired of having to teach myself to persevere. It's old and frustrating. But even my frustration is a prayer. And I know I can keep standing and running this race because I'm united to Christ. He will enable me to persevere, and he will do the same for you.

So, perseverance? It's happening. God is doing it in you and in me. Keep standing. Look forward and up--Jesus did this before we did, and he will keep lifting us up before the Father until the day he returns and makes all that is broken right. 


References

Douglas Farrow, “T. F. Torrance and the Latin Heresy.” First Things: A Monthly Journal of Religion & Public Life no. 238 (December 2013), 27. 

Christian D. Kettler, The God Who Rejoices: Joy, Despair, and the Vicarious Humanity of Christ, (Eugene, OR: Cascade Books, 2010), 142.

Thomas F. Torrance, The Mediation of Christ, (Grand Rapids, MI: Wm. B. Eerdmans Publishing Company, 1983), 92.

Lemons

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. 

 

Turning over

Have you ever been afraid that you can't stand on your own? Last night I woke up in the middle of the night, needing the bathroom, and instead of easily getting up, I felt stuck in place. My joints had become so stiff in the hours of sleep that I wasn't sure I could even turn myself over to crawl out of bed. I'm used to pain in the middle of the night, but I've never had to even think about waking my spouse to help me out of bed. But last night I did. Luckily, with much struggle and some groaning, I was able to to get up by myself. But the stiffness was startling. "Go back to sleep. You will be ok," I whispered to myself. This morning I woke up to the same feeling, to stiff joints screaming in pain, taunting me to stay immobile. I'm not a morning person in general (Morning KJ is "grouchy KJ"--ask my husband!), but I will say waking up to intense pain is just a difficult way to start the day. Will I feel like this all day? Is my disease getting worse? When holding my coffee cup is painful and turning to set it on the side table elicits a deep groan, it's hard to not feel discouraged about the approaching hours and coming week. But in letting myself just "be," to simply sit and wait out the siren-screeching stiffness in my body, my mind and heart can find the space to be at peace. It's been a painful morning (like most of my mornings x10, dammnit!) but I feel peace. Why? I'm loved by God. No matter if I can make it to work today or do any school work, I am loved. Knowing I am loved by God gives me space to accept today's pain and its intrusion in my life.