how to talk to friends who are sick

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.

It's ok...

that it's not ok.

When you talk to a friend who isn't doing well, do you instantly feel like assuring them it will be ok?

This has been a big week for me on several fronts but one area in particular is weighing heavy on my heart--my physical health. Yesterday I had my long-awaited appointment with my new gastroenterologist (GI doc), Dr. Kirkpatrick. It was one of those rare appointments in which I felt truly respected, heard, and honored as a young person who has faced significantly difficult circumstances. But it was also overwhelming. Heavy. Discouraging and encouraging all at the same time.

Sometimes when I share with friends or family about heavy days like these, I sense them wanting me to just feel better in how they respond. And I know it's out of love. It hurts to see those whom we love in emotional and physical pain. It seems socially unacceptable to "not be ok." Regardless of social protocol, experience tells me that my heart will be healthier if I allow myself to not feel "ok" on days like these instead of pushing through, forcing a smile, and cajoling myself to be better by forcing cliched truths down my throat.

Truly difficult circumstances need to be respected for what they are. Part of what overwhelmed me in my GI appointment was how seriously Dr. Kirkpatrick took my symptoms. After talking through our plan of action he looked me in the face and said, "Katie Jo, I am so sorry that you are 26 years old and have had to see as many doctors as you have and that you have been this sick." [Stunned.] I don't think I've ever had a doctor express this kind of sensitivity to the fact that being this sick at 26 is not normal. In fact, I've mostly forgotten that my experience isn't normal! I'm so good at pushing, at being resilient, that in the race to make it through sickness and still have a life I end up mentally minimizing the gravity of my fight. Sometimes I need to let myself feel that it is wrong and hard that I have to be sick. I need to let myself grieve over the strong possibility that I have Ulcerative Colitis in addition to my spondylitis. The human heart wasn't made to bear significant sickness and just be fine with it. I was made for wholeness, for endless possibility, for love and life and joy and peace. Sickness cuts against the longing in our hearts for wholeness.

Today a client told me she feels her "body is failing her," and my eyes instantly welled with tears. The most enduring feeling yesterday left me with was a sense of a loss of control of my body. This was my pain yesterday, the reality that I needed to let sink in. Existentially, none of us are in full control over our bodies or circumstances. But those of us who suffer from significant medical illnesses have to intimately face this fact.

So, right now my body feels out of control. Medicines I have to take in order to function are causing me to gain weight, no matter how much I exercise or eat well. And even after years of taking chemotherapy infusions for AS and other strong medicines, I've still developed some sort of additional autoimmune problem. This is all immensely frustrating, beyond my ability to form in words.

Today on the way to my internship I meditated on Psalm 91:1-2.

He who dwells in the shelter of the Most High
will abide in the shadow of the Almighty.
I will say to the Lord,
“My refuge and my fortress,
my God, in whom I trust.”
— Psalm 91:1-2

After giving my heart space to break yesterday I was able to sit with God in this Psalm. The words sank in deep. I dwell in the shelter of the Most High. I abide in the shadow of the Almighty. God is my refuge and fortress. 

Years ago when I first got sick and was waiting desperately for a diagnosis and help I remember reading through the Psalms and realizing that when they speak about "waiting on the Lord" they are talking not about waiting for our circumstances to change but about the goal and end of our lives. As I did then, I again am realizing that I am not just waiting to be healed, for diagnoses, and for medicines to work like doctors hope they will. I am waiting for God Himself

This morning as I repeated Psalm 91:1-2 to myself over and over I realized again that what matters in life is not how much I weigh, how I look, or even my ability to counsel, or be productive. The object of my life is to know God. 

My suffering is holy ground. God is in the midst of it. It's a mysterious thing to attempt to describe, this God-filled, painful walk. There is something about recognizing and feeling my utter lack of control that gives me perspective to see beyond my circumstances. Grace is knowing that a diagnosis and more suffering is not the end of my story. God is the end of my story. Communion with the living God who is conquering over disease and death is where my life is headed. And the mysterious beauty is that the point at which I reach the end of myself and my illusion of control is also the place in which I can know the presence of the God who suffered yet lives. These are moments of trust, of actively placing myself in the care and fortress of God. And they only come when I am willing to thoroughly acknowledge that I feel small and scared, angry and confused, weary from years spent carrying uncertainty. 

We have to allow ourselves and others to "not be ok" in order for them to know and experience real hope. I need space to break, and I'm convinced others do too. Those uncomfortable moments of not knowing what to say when you so desperately want to fix and soothe (or be fixed and be soothed yourself!) are the very spots where pain is carving space to know and experience hope. Don't rush through the pain. Hope's on the other end if we only can let ourselves feel.

My "freedom nails" with my #CureArthritis bracelet. For about a decade I've often painted my nails red when I feel the need to rise above my circumstances, to feel free. Silly, but effective ;)

My "freedom nails" with my #CureArthritis bracelet. For about a decade I've often painted my nails red when I feel the need to rise above my circumstances, to feel free. Silly, but effective ;)

That's where I'm at--facing a new diagnosis, feeling somewhat uncomfortable in my own skin, and trying to be at peace with the fact that none of this will be fixed quickly. I realize that some of you are facing similar diseases and might be in the diagnosis process yourself. When I first got sick I had no one to look to swap stories or make my symptoms make sense. So, for those looking for details of how autoimmune disease can look and feel I would like to be more honest and detailed sometimes with what I'm facing health-wise. Perhaps later in the week I can explain in more detail, but for now know that my doctors are very suspicious that I have Ulcerative Colitis (UC) either in addition to Ankylosing Spondylitis (AS) or that UC is actually what I've had all along and that my spondylitis (inflammation/arthritis of the spine) has actually been caused by UC the whole time. I will be having an endoscopy and sigmoidoscopy July 20th and hopefully will get some definitive answers then.