by Jennifer Crystal
A bereaved creative writing student of mine recently lamented how infrequently friends and family talk about her lost loved one. “When she was alive, everyone asked how she was doing,” the student said. “But now no one mentions her. I just wish someone would say her name.” Classmates validated the student’s pain, sharing similar experiences of people being so afraid to say the wrong thing that they say nothing at all. Or, they offer unsolicited advice, or make insensitive comments like, “aren’t you over that yet?”, leaving the grieving party feeling isolated instead of comforted.
Similar issues arise in the chronic illness world, when healthy friends, family members, colleagues, or even strangers say something hurtful instead of helpful. These insensitive comments are so common that they’ve become fodder for “Chronic Illness Bingo” memes, with squares for “Have you tried…?”, “I get tired too”, and the ultimate bingo, “But you don’t look sick.”
To reframe this game, I’ve come up with a list of statements that I wish were “Chronic Illness Bingo” squares—things that are good to say to a Lyme or chronic illness patient:
- I’m so sorry you’re going through this. This simple statement offers acknowledgement and compassion, which patients crave. Just this one line will likely mean more to a patient than any litany of platitudes or advice.
- We’ll get through this together. Without being patronizing, it’s important to show a patient that you’re on their team. You’re not trying to tell them what to do, nor are you pushing them to get well at a certain pace. You’re simply letting them know you’ll walk with them on the journey.
- What do you need? Often, people will say, “Let me know if there’s anything I can do to help.” While this offer is well-meaning, it’s unlikely that a patient will take you up on it, because it’s not easy to ask for help. If you directly ask a patient what they need, however, they might be able to give you a concrete task: “I need groceries, I need someone to help me with my insurance paperwork, I need a hug.”
- Would it be helpful if I…? It’s so important for Lyme patients to feel that they have some agency, when so much of it has been stripped away by illness. Instead of assuming you know what a patient needs, just ask. Some good examples are, “Would it be helpful if I went grocery shopping for you this week?” or “Would it be helpful if I made that phone call for you?”
- This is so unfair for you. Again, more than anything, Lyme patients need validation. Show empathy for their situation by attempting to put yourself in their shoes. How would you feel if you were bedridden, misdiagnosed, misunderstood by doctors, or given a nebulous prognosis? What would you need to hear if you were missing out on life for an indeterminate amount of time? Something like, “This is so unfair for you,” or “I’m so frustrated on your behalf,” or even “I wish this wasn’t happening to you” would be great to hear.
- I hear you. More often than not, Lyme patients just need someone to listen. You don’t have to give any specific response to what you hear; just acknowledge that you’re actively listening.
- How can I learn more about tick-borne illness? Show patients that you want to understand their illness(es) by offering to read websites or books, or watch documentaries. You might offer to help them find out more information, too, if they’d like.
- Could I come by for a ten-minute visit at lunch time? Lyme patients often crave human interaction, but don’t have the energy to go out anywhere, and are afraid they won’t last for the length of a “typical” visit. If you make clear that the visit will be short and give them a specific timeframe, a patient might be more comfortable accepting your offer. (Note: during COVID-19, visits should be distanced and masked, preferably outdoors, and you should first ask if a patient is comfortable doing an in-person visit. If not, offer a virtual visit).
- Could I give you a hug? This one likely has to wait until after the current pandemic, but when it’s safely possible, it’s a really important one. As I explained in my post “Hugging It Out,” physical connection helps us heal.
- You are doing a great job. Patients’ bodies are working full-time to heal. The process is exhausting and often frustrating. Positive reinforcement and encouragement go a long way.
- I want to help but I don’t know how/don’t know what to say. Patients don’t expect you to be perfect or to say or offer exactly the right thing. They may not even know what they really need. Illness is foreign ground to patients, caregivers, and healthy comrades alike. We’re all figuring it out as we go along. It’s okay to admit that you aren’t sure what to do or say, or that you’re afraid of doing or saying the wrong thing. That honesty lets the patient know you care, and can open up a good conversation.
Hopefully this list offers a good starting point. With practice and open communication, it shouldn’t take long to score a bingo.
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Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at email@example.com.