5 Keys to Self Care with Chronic Illness
Now before you roll your eyes at me, please know this is not an article about how you should take more bubble baths or spend more time at the spa. I think that self-care as a concept has been swooped up by culture at large and has been made too time-consuming, expensive, elaborate, or just not realistic for those who are struggling with chronic illness. As a counselor and as a fellow chronically ill person, I’m always looking for ways to simplify self-care so that it feels accessible, realistic, and attainable for everyone, regardless of what their functioning looks like today. I’m going to give you a few principles to help you guide your thinking around self-care, and I promise none of them will involve putting cucumbers on your eyes.
Key #1: Self-care is being kind to your future self.
This one is my favorite, and I think it’s often overlooked. Your future self could be you in 5 minutes, you in 2 hours, you in 10 days—basically you at any point in the future. I’ve found that sometimes we forget that there will be a future version of ourselves and often make choices that are immediately beneficial for current self, but disregard future self. For example, Current Katie really loves hanging out on the couch at night and watching TV shows with her husband. However, sometimes Current Katie forgets that Future Katie really needs solid sleep and a consistent bedtime, otherwise she will become the queen of Migraine City. Self-care in this situation could be Current Katie remembering and being empathic to Future Katie by turning off the TV and sticking to her bedtime. When I wake and feel rested, I can thank Past Katie for making helpful choices. I promise your body and brain will respond so well to this kindness and empathy. How can you be kind to Future You?
Key #2: Self-care is pacing yourself and acknowledging capacity.
Chronic illness is a marathon that no one signed up for and not a sprint, and therefore we need to realistically assess our energy and pace ourselves accordingly. Many of my clients who struggle with chronic illness get so frustrated with themselves when they are feeling particularly symptomatic because of how much they need to slow down. They see slowness and reduced capacity as bad, so as soon as they start to feel just a tiny bit better, or have a day where their pain is less, or their head is clearer, they SPRINT into activity, productivity, and doing. However, they inevitably overdo it and find themselves 5 steps back from where they started. I know we live in a culture that glorifies hustle and says that you are capable of anything with enough coffee and gumption, but I am here to regretfully inform you that you and I are just humans. Humans who have capacity and limits. Slowness can be frustrating, I know, but are you acknowledging how much work your body is doing on a daily basis to contend with chronic illness? You may feel like your capacity is reduced, but it’s actually likely just being redirected to the places where your body needs it the most. Self-care is engaging in an empathic assessment of your energy that doesn’t shame for diminished capacity, and paces according to the limits you have today. How can you acknowledge the hard work you’re already doing and set realistic, empathetic goals for yourself?
Key #3: Self-care is setting and holding boundaries.
I could write a small novel about the importance of setting boundaries, but I’ll keep it brief. For those unfamiliar, boundaries are lines that we draw that allow us to understand where we start and another person ends. I have found in the chronic illness community that there is often a feeling that we “owe” those around us a story or explanation of what our illness is, how it happened, our current treatment, and how we’re doing. Now, you may be thinking, “Why would it be bad to share this information?” It isn’t a bad thing to share this information, but it matters who we share it with and when. This is great information to share with a close friend, spouse, or trusted coworker, but you would probably feel pretty weird if you woke up one day to find that this information and a picture of you was plastered on a billboard outside of your house. Why does that feel weird? Because it lacks boundaries. Anyone, regardless of their relationship to you, now knows something that is deeply personal about your life. This isn’t healthy or helpful for you, because it’s fundamentally unbalanced.
Roll with me here—think of your journey with chronic illness as a treasured family heirloom—like a vase. This vase is something that you can show to people that you trust understand how important and storied this vase is. You trust that they would take good care of it if you left it with them. You know they wouldn’t sell it, or paint it, or smash it. They care about the vase, because it’s yours and you care about it. Sometimes people you don’t know very well demand to see your vase. They want to know what the big deal is and want to hold it themselves. They just want to see it, and because of that they don’t hold it with care and caution or with awe and respect. It’s stressful for you to have them to hold it because you know they don’t understand the full value. They are stopping by the museum, not participating in the story. This is when you get to set a boundary. You get to say, “No, we don’t know each other well enough for me to share that information with you.” Or, “That’s not something I really feel comfortable talking about right now.” Hear me, fellow chronically ill friends, you do not owe anyone your story. It is yours and yours alone. Please, share it with those you trust because it’s so healing to journey together, but also know you have full permission to say no. Your story should not be shared out of compulsion and you get to decide both with whom and when you share. How can you set and hold boundaries with your story?
Key #4: Self-Care is an activity or practice that you use to find consistency.
Chronic illness comes with a lot of uncertainty, change, and unpredictability. It’s often anyone’s guess what you’re going to feel like in the morning. When’s the next flare up? What medication side-effects will I feel today? In those spaces, we need to speak to our uncertainty and fear. We need to remind ourselves that, although what we are dealing with is stressful and overwhelming, there are a few things that have not changed. There are things we can count on to be true, despite everything else feeling out of sorts. To find these things we need to ask ourselves, “What can I do that is life-giving, stable, and predictable?” Self-care can look walking a familiar route. The trail you take is known, familiar, and unaffected by your last doctor’s appointment. You could also do something like cooking a meal for yourself. Bread, in the same conditions, has predictable rise and fall. A recipe has objective instructions that yields a consistent outcome. If your pain level is a 4 today and a 10 tomorrow, water still boils at 212 degrees. Re-read a favorite book. The characters, the story, and the ending are the same regardless of that call with your insurance company. Remind yourself that the sun always rises, your coffee tastes the same each morning, and the mail is delivered every day but Sunday. Can you hear these patterns and rhythms of establishing grounding through knowing? We care for ourselves and we regain stability when do small things that are familiar and wholly for our own enjoyment. This steady cadence provides the consistency we need to see chronic illness through without becoming consumed. What practice could to try to experience consistency?
Key #5: Self-care is boring and monotonous.
It’s not Instagram-able. It’s taking your meds, going to doctor’s appointments, calling to schedule that consult, avoiding your triggers, folding your laundry, and taking a day off only to stay home and camp out on your couch. It’s asking for help, saying no to a new project, taking a shower, not procrastinating, making a budget, making breakfast, and being honest when someone close asks you how you’re doing. For me, boring self-care means packing my lunch the night before work, making sure the dishes are done, taking emergency meds when I need them, and staying on top of staying in touch with my people. Boring self-care is tiny moments of victory and triumph that will likely go unnoticed, but are nonetheless small, worthwhile investments that prove to yourself that you are worth taking care of. What boring activities can you see and celebrate as self-care?
My hope is that we can experience a change in perspective around the concept of self-care and come back to these principles when we are feeling out of sorts. When we live with chronic illness, sometimes our bodies and brains can feel foreign, frustrating, or overwhelming. These self-care practices are meant to rekindle awareness and knowing in your body and gently bring us back into a kind, gracious relationship with ourselves. Your relationship with you is so worthy of your attention, and my desire for you is that these small shifts in your thinking and behavior will bring about peace, reconnection, and restoration—all without putting cucumbers on your eyes.
Written by: Katie Marsh, MA, LPCC
In case you didn’t catch all the extra letters at the end of her name, not only is Katie a Minneapolis/St. Paul member of our Tribe, she’s also a phenomenal Licensed Professional Clinical Counselor. She’s the real deal. She personally “gets it,” as she battles Chronic Migraine, and it’s literally her job to help empower others with hope and lasting life-change. In her free time you're most likely to find her baking, wandering museums with her husband, running, or sorting through a stack of books that she admittedly keeps telling herself she’ll read.
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