What Chronic Illness has Taught Me About Showing Up

(Some Thoughts on Supporting Loved Ones Through Hard Things)

When I was diagnosed with chronic illness at 22, I soon realized that most people had no idea what to do with the fact that I was sick. People wanted to help, people wanted to show up for me, people cared, but most of them didn’t have a clue where to start. I think that in many ways this is cultural. In movies, TV shows, and books, when someone becomes sick the people around them are often shown rallying support and coming together in this time of need. However, most movies and books stick to narratives around acute illness, where the support only needs to be rallied for a period of time. We rarely see narratives around what happens when someone becomes sick and is likely to stay sick. As a society that is already obsessed with health and productivity, the narrative frameworks we see for dealing with lifelong illness and disability are few and far between at best. Our cultural scripts train us to look for ways to “fix” difficult, painful, or sad situations, even when the situation isn’t fixable. Additionally, our dominant culture in the US doesn’t allow much room for people admitting they don’t know what to do. Lack of knowledge, at least in adults, is often seen as a weakness instead of an opportunity to learn and grow. In my experience, these factors often come together to create a support deficit, not only around people with chronic illness and disabilities, but for many people going through long-term difficulties and grief in general. Grief and pain are often inherently isolating, but when you add to that isolation the feeling that the people around you have no idea how to be around you anymore, the loneliness can start to feel suffocating.

As I’ve come to better understand my own experience of illness and grief, and talked to others who have experienced grief as a result of chronic illness or another type of pain or loss, I have noticed a pattern emerging in what made me and other people feel supported, or what we wish those around us had been able to do. While I don’t pretend for a second to have all the answers, I do feel that my experiences have taught me some useful lessons about showing up and offering support. These lessons, as cheesy as this may sound, can be pretty accurately summarized by what I call “the 4 Cs”: curiosity, communication, compassion, and community. I am going to be more specific about what I’ve learned and what I recommend in a moment, but I’ve found that embracing these overarching themes in your efforts to support others can be a helpful approach. For example, if I have a friend who is going through something painful, I might feel the impulse to advise or “fix” them or I might feel scared of what they’re going through, but if I lean into curiosity instead, it shifts my priority towards understanding and connecting with my friend. Similarly, I might assume that my friend who is grieving “needs space” without realizing that they are actually feeling isolated in their suffering, but if I lean into communication, I can admit that I don’t intuitively know how to support them and ask them what they need. If a friend is going through something I don’t understand, I might be tempted to judge their reaction and think that they’d be doing so much better if they were handling things differently, but if I lean into compassion then I can be loving and gentle towards them, even if I don’t understand what they’re going through. If I a friend of mine is sick or faces other limitations that often result in them cancelling our plans, it can feel easier to just stop inviting them to hang out, but if I can recognize the universal need for community, I can prioritize keeping my friend in the loop so that they don’t feel forgotten. These general themes are all deeply interconnected and contribute to a common goal: keeping the focus on shared humanity and connection instead of getting caught up in the panic we often feel when we are forced to confront the fact that much of life is beyond our control.

Below are some specific examples of how these themes can look in practice. All of these examples are either things people have done that have made me feel supported, or things I wish people had done. I am learning to ask for what I need and set my boundaries, even when other people don’t have the framework to offer support, but it’s always a massive relief when someone else seeks to be thoughtful and supportive without me having to ask for it. So, for those of you seeking to show up for the people you love, I hope you find some of these suggestions helpful!

  1. Don’t assume everyone else is showing up. Maybe everyone is commenting on your friend’s Facebook updates with their well-wishes, but that doesn’t mean that all of them (or any of them) are showing up physically and offering tangible support. If you feel called to show up, show up no matter how many other people might be.
  2. Give people options. Sometimes general offers of support like, “Let me know if you need anything!” can feel overwhelming when you’re struggling to get through the day. Illness, grief, and depression can all cause cognitive dysfunction, making it difficult to make choices or articulate your needs (even to yourself). One example of this is that sometimes when my fatigue, pain, and sensory issues get bad it’s hard for me to take initiative to get my needs met or even understand what they are, so often my brother will support me by giving me options to choose between instead of open-ended questions: “Do you need to eat or do you need to shower?” “I can make you a quesadilla to eat or a baked potato, which sounds good?” “Do you want to watch a movie with me, or do you want me to help you set up your stuff on the couch and you can watch something by yourself?” This tactic ensures that I am getting support, even when I don’t have the energy to take initiative. In a non-family setting this might look like telling a friend, “I’d like to show you some support this week. Would it be more helpful for me to bring you a meal, or for me to come over and help you do some laundry?” Offering specific ways you’d like to be supportive can take pressure off the person you want to support by not requiring them to gauge what you’re able or willing to do.
    Giving people options also works well with offering emotional support. For example, “Do you need to talk about the sad/hard/scary thing right now, or do you want to be distracted?” “Do you need to process your feelings or do you just want to feel them and have me present?” “Do you want to problem solve this situation or do you just need me to validate your feelings right now?” This practice helps establish boundaries for the person you are seeking to support and helps you channel your good intentions in ways that will actually make them feel loved and supported.
  3. Don’t assume that people want to be left alone. This goes hand in hand with the first two points on this list. I think it’s fairly common to assume that people who are going through hard things “need some space.” But grief and pain can be very isolating and everyone is different in how they process those difficult feelings. Give your loved one options and don’t be afraid to ask what they need/want: “Do you need space to process this alone? Do you want to process it together? Do you need someone to sit with you, but not talk about how you’re feeling right now?” Sometimes people don’t know what they need, and that’s okay, sometimes just knowing that the people who love you are seeking to support you in the most loving and helpful ways possible is comforting and helps you feel less lonely.
  4. Do your own research. This may not be pertinent to every situation, but when I was first diagnosed it really made me feel cared for when people in my life took a little time to learn about my condition on their own. I had a lot of conversations where I’d have to explain everything I knew about my condition, its medical history, and possible treatments, which can become very exhausting. When people do their own research, (even just 20-30 minutes on the mayo clinic website) it means I get to skip over educating them and connect by sharing my specific experience. I totally encourage people to ask questions, but it’s always super thoughtful when people do their own research and then primarily ask me questions that only I can answer.
  5. Utilize “Ring Theory” when you need process your loved one’s situation. I’ll link an article below, but to summarize, Ring Theory is the idea that in difficult situations it’s important to have rings of support that ensure that those closest to the pain don’t have to provide care for those farther from the pain. I have been put into a position where I had to console other people about my chronic illness/disability a number of times and it’s really, really hard. I am still grieving, I don’t have any answers, I don’t have peace about this yet, so I don’t have the tools to comfort someone else about my pain. (This is not to say that I can’t show up to support friends about other things, but when it comes to my pain, I shouldn’t have to facilitate other people’s processing.) Please do take care of yourself and process your feelings about your loved one’s situation, but get the support you need from people farther removed from the situation. (More on Ring Theory here: https://www.psychologytoday.com/us/blog/promoting-hope-preventing-suicide/201705/ring-theory-helps-us-bring-comfort-in)
  6. Ask permission before asking personal questions or offering advice! As I’ve said before question-asking is a super important part of communication and learning to offer support that is helpful and makes your friend feel cared for, but people aren’t always going to be up for answering your questions. Simply checking in before asking a personal question shows that you are prioritizing your friend’s needs. “Hey, can I ask you a question about your health?” or “Do you have energy to tell me about ______ right now?” are a great start!
    Similarly, always ask before offering advice. Your sick friends, especially, are likely receiving a lot of unsolicited advice, which in my experience, can be really exhausting and can even make me feel like the people around me think I am not doing enough to make myself better. “I heard about this treatment today, do you want me to tell you about it, or would you prefer I didn’t?” And if the reply you get is “No, I don’t want you to tell me about it” respect it. It’s not your job to “fix” the situation, it’s your job to love and support your friend to the best of your abilities.
  7. Keep seeking connection and inclusion. I really appreciate the people in my life who continue to invite me to events and activities no matter how often I have to say no. Illness, disability, grief or mental health challenges often limit people’s abilities to participate in activities and seek out community, and, in my personal experience, this can lead to a lot of anxieties about being left behind or forgotten. So, it’s a relief when people keep inviting me to events and parties even when I can only come a fraction of the time. It reminds me that people still want me around and don’t see me as a burden. Bonus: I’ve had a close friend ask how we can work together to co-host events that are accessible for me and allow me to interact with others and meet new people in a way that works within my limitations. This kind of thoughtfulness means so much to me and makes me feel very cared for and wanted.
  8. Respect boundaries! Respect for boundaries should be the basis of any adult relationship, but unfortunately this is not always the case. In times of emotional and physical stress it can be harder to self-advocate and set firm boundaries. You can support your loved one by respecting the boundaries they have set and creating safety in your relationship for them to set more if they need to. Don’t push back against boundaries, don’t get defensive when a boundary is set or a request is made, and accept that while you may not always understand the boundaries your loved one needs to set, you can still respect them.
  9. Find sustainable and consistent ways to show up that work for you and your loved one. Especially in instances where the difficult situation is long term like disability, chronic illness, or loss, you’re not supporting your loved one through something, you’re learning to be with them in it for the long haul. This means getting creative and finding sustainable and meaningful ways to show up over time. You’re not likely to figure it all out right away or to always show support perfectly. You’ll make mistakes and both you and your loved one will likely have to go through some learning curves in order to keep showing up to your relationship. But a commitment to the process of learning to care for one another is, in my opinion, one of the best things any of us can give each other through the challenges life has to offer.

This list is by no means exhaustive, as grief and pain are highly personal experiences, which is why I think the 4 Cs (curiosity, communication, compassion, and community) can be helpful. Keeping our focus tight on shared humanity and connection helps us maintain meaningful, supportive, understanding relationships with the people we love, even through difficult, confusing, and sad circumstances. If we can learn to stop fearing one another’s pain so much that it creates distance then we can allow life’s challenges to call us into deeper connection and community. This facilitates healing, growth, and comfort, not only for the people closest to the pain, but for all of us.

 

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