building community

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.

A New Season

Settling into our new home

Settling into our new home

(I wrote this last week as I was packing to move--hence the blog silence lately!)

On Friday my husband and I are moving into a downtown Denver apartment building to start our job of being a Cares Team. (You can learn more about the Cares Program here.) As with most big life changes, I'm excited, a teensy bit apprehensive, slightly nervous, and a bit stunned at what is happening. At the end of this month I will also be starting my new counseling internship at Authentic and True Counseling Center, where I will be starting my private counseling practice. In a whirlwind of events, I ended up needing to leave my original internship placement early. What could have been an incredibly frustrating circumstance led me to ann amazing opportunity. Essentially, at Authentic and True I will get to start my counseling practice a year early! (Which also means I will start being paid now, rather than upon graduation! Counseling folks know this is a remarkable blessing that is pretty much unheard of for master's level counseling students.) The plan is that I will be a part of Authentic and True's practice the entire time I am getting my counseling licensure hours. So, rather than 1) working an internship that's unpaid and will in no way lead to a job and 2) graduating and not having a direct way to start accruing clinical hours for licensure, I have a job, an amazing supervisor, and a stable place to start my clinical work! 

It honestly feels like the summer of blessings. In addition to the new apartment/job and internship, all my GI testing showed nearly nothing wrong! I don't have Ulcerative Colitis! At first this felt pretty discouraging--an odd reaction only those who have carried the burden of being undiagnosed or misdiagnosed understand. But in the end, I'm relieved. Having AS is enough for one lifetime. All the tests showed was some stomach inflammation and a small ulcer, probably caused by all of the anti-inflammatory meds I have to take.

So as I sit here in Starbucks, escaping the war-zone of my half-packed apartment, I'm reflecting on this new life season and the newfound sense of resolution it has brought. I, Katie Jo, with and despite my chronic disease, can live a good, fulfilling, productive, and exciting life. Foraying into the blogging world has made me aware of some amazing women who are living this chronic-illness life with so much intention and fierceness. Women like Aimee who has Rheumatoid Arthritis and regularly posts videos of her workouts. (Aimee, your "Stronger than RA" t-shirts strike a chord!) Or take Kenzie , a college student and nanny who has juvenile idiopathic arthritis, is studying to be a social worker and regularly blogs with honesty and wisdom beyond her years about her life and disease. My new circumstances mixed with inspiration of their determination and diligence are giving me a new, stronger, more certain desire and will to live my life as fully as possible. I want so deeply to not let AS win in my fight to live with joy and the intention to bless others. And, lately, I'm just not ok with AS keeping me on the couch instead of on my bike, walking my dogs, or working out. 

It's a new season, which means I have new opportunities to exercise agency in my life to live as I want--as a fierce, loving daughter of God who won't let disease keep her from loving others (or herself!).  And there, friends, we have the constant tension of chronic illness--of practicing acceptance while also pushing for fullness in life. Both are necessary, but without the tension, life becomes unbalanced. May we live the tension well!

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.