Supporting Someone Living with Chronic Illness
“A kind gesture can reach a wound that only compassion can heal.”--Steve Maraboli
A theme that has been emerging in my work with clients recently revolves around understanding how to best support someone who is living with chronic illness or going through treatment for a life threatening disease. As a mental health professional who works in a healthcare setting, I have some ideas of what I think is most supportive and helpful, but decided it would be extremely valuable to reach out to individuals with chronic illness and ask them the following questions:
What has been most supportive and helpful to you are someone living with a chronic illness?
What do you wish people better understood about your life?
The suggestions here reflect the themes I pulled from the generous and insightful responses I received:
Be specific in your offers of help and support. While many people who responded identified at least one person in their lives where the adage “Let me know if you need anything” really means absolutely anything, it isn’t always clear what “anything” means for others. Think about how you can be more specific in your offers of help. Offers to drop dinner off, pick up groceries, go for a coffee run, or drive to appointments seem to be universally appreciated. Take an inventory of your skill set and availability in order to make realistic suggestions of how you can provide assistance and support. If you feel you may fall into the “anything really means anything” category, be direct about that and ask, “How can I be of most help to you right now?”
Asking multiple questions or providing unsolicited advice about the diagnosis and treatment may not always feel supportive. While it may be well-intended, it is an error to assume that people with chronic illness want to talk about their symptoms and treatment regimen with you in great detail. If they find this helpful, by all means give them the time and space to do so, but asking several questions or applying any pressure to talk about it can feel burdensome and judgmental. Consider that the person might want to use the time with you to take a break from thinking about their illness, or to spend time discussing and enjoying the parts of their lives that, while likely impacted by their illness in some ways, are not defined by it. If you feel it is beneficial for them to know they can talk to you if they want to, say so. Letting someone know you are open to listening to them on their own terms is extremely meaningful.
Accept the “bad” days. One person shared with me that they want people to know that they are mostly doing their best, but some days are particularly challenging both physically and mentally, and sometimes they need to rest or “take a day off from caring about my illness”. This need for people living with chronic illness to take a break can be worrisome to the people who care about them, as the perception is that they might be “giving up”, and it is important to “keep fighting”, but this might be a necessary piece of their coping process. Keep this in mind as you work to respond to the person’s rougher moments in ways that demonstrate your understanding of this, and desire to accept and embrace them where they are.
Be mindful of how you characterize and respond to the individual’s illness, as they may view it as part of who they are. I’ve received feedback from people who express having internalized being a survivor of chronic illness as part of their identity. If you accompany someone to a medical visit or assist with their medical care, for example, and feel uncomfortable or maybe even squeamish about any part of it, consider how your expression of this, either directly or through your body language, may inadvertently result in negative feelings for the person. I’ll pause here to share that caring for a loved one with a chronic illness can be fatiguing and no one is expecting you to be a heroic robot healthcare companion like Baymax in Big Hero Six. You have permission to experience negative feelings in response to a loved one’s chronic illness and also need a support network. This may be a network you build from the people that are already in your life, or one you build with others through a caregiver support group. Many mental health professionals are able to address caregiver fatigue. Contemplate what support you need in this experience as well.
Get in there. Two of my wonderful hospital social work colleagues use the term “get in there” (and now I do too) as a way of describing our obligation to address our own discomfort with a situation or interaction that may make our initial reaction one of avoidance. After taking some time to reflect on what may be driving this in our work (something about the situation reminds us of something we struggle with in our own lives, a fear we won’t be seen as helpful, our own sense of self-doubt), and getting back in there with someone or something, the outcome is often better than we could have ever imagined. As a bonus, we often learn more about ourselves and what we are capable of in the process. If your initial response to a loved one’s illness is avoidance, don’t let that be the end point for you. Ask yourself what’s driving your discomfort and take some time to examine this. Endeavor to push past the voice in your head telling you that your offer of help or presence isn’t needed or won’t be appreciated and get in there.
