How I Talk To Others About My Invisible Illness
The Chronic Illness Communication Toolkit
Early on, I learned strong communication was the key to unlocking close personal connections. As I grew up, I took pride in clearly sharing my thoughts and gracefully guiding conversations with others. But after being diagnosed with chronic migraine in my 20s, my trusty communication skills suddenly fell short.
In the beginning, conversations about my condition were full of discomfort and disconnection. For the first time in my life, I was unsure how to express my experience. Life with chronic illness creates a huge gap between how I look externally (unchanged) and how I feel internally. Many people think a migraine attack is “just a headache.” But migraine is a debilitating, invisible condition. Its highly varied, painful symptoms can fluctuate daily or even hourly.
I haven’t always known how to make this unseen part of me understandable to others or share the process of caring for my body and mind. Additionally, multiple instances of being disbelieved by doctors have left me fearful of being judged or even rejected by those I trusted.
Yet, six in 10 Americans live with a chronic condition. It’s especially common for women to have one or more chronic illnesses during their lifetime. While it took me a few years of practice, speaking about my chronic illness now feels second nature. If you also live with chronic pain, I hope my experience and the following communication tools will help you better connect with the people in your life.
Connect Through Common Language
If I don’t understand my own experience, how can I possibly explain how I feel to others? Though my condition is often confusing and chaotic, learning the proper language has helped me express myself adequately.
In the first few years of my diagnosis, I discovered the chronic illness community had my back. New definitions and concepts have helped bring my invisible illness to life for others. I now use a specific phrase when my symptoms suddenly get worse (a flare-up); a concept to clarify my struggle to manage energy (the spoon theory); and a rationale for why I break down ordinary tasks into chunks (pacing).
When you’re faced with little energy and emotional bandwidth to communicate, a shared shorthand is a game-changer. It’s much simpler to tell a friend, “I’m flaring today,” instead of listing out a litany of symptoms. When my sister wants to know if I have the energy for a phone call, I can decline by saying, “I’m low on spoons.”
All of these words should be mainstream, but ignorance and stigma still isolate the chronically ill. Sharing this specific vocabulary helps educate and empower able-bodied allies, who can then help create a ripple effect of greater awareness and acceptance.
Use A Pain Or Symptom Scale
Another helpful tool to quickly share how you feel is a pain or symptom scale. While numbers can only provide a limited version of reality, they’re a great jumpstart to give someone an easy baseline and help guide behavior.
In the early days of my diagnosis, I used a pain scale ranging from one through 10 with my family. If I was at four, they knew I could operate more independently and tolerate some activity and conversation. If I was at seven, they switched into care-taking mode while I focused on coping.
Explaining how you feel and what you need can be incredibly draining on a high pain day. Though numbers can’t communicate nuance, they’re a great tool to protect precious energy and save your spoons for what matters most.
Many of us “spoonies” feel like the burdensome or “difficult” one in a relationship with our increased needs for accommodations or flexibility. But the truth is, we are only burdensome when we don’t give others the chance to learn, prepare, or adjust.
Many friends and family are eager to help but feel helpless or uncomfortable broaching the topic of chronic illness. However, if you address your needs first, you’ll likely be met with openness, compassion, or curiosity.
Before a gathering, I’ve made requests like using a quiet room, bringing my own food, or limiting music or scents, as all of these things can cause a migraine. During hang-outs or phone calls, I’ve asked others to lower their voices. Even strangers have been empathetic to my needs—a public rest stop once turned their music down at my request, and a store has opened their doors early for me.
Setting expectations with others is an effective strategy to reinforce that you aren’t unreliable—your health is. Before an upcoming event, I recommend letting the host know that while you’re hoping to attend, there’s a chance your body won’t cooperate. If and when you inevitably have to cancel your RSVP, try using empowering language based around “thank you” instead of “I’m sorry.” The same goes for thanking someone when accommodating your needs. Most of us apologize more than we need to for a condition that is not our fault.
Balance Speaking Up And Staying Quiet
Like many people with an invisible illness, I’ve often been told, “But you look so healthy!” Sometimes, I speak up to educate the person on the invisible nature of chronic illness. Other times, I lean into my need for quiet, laughing off the comment to save my spoons.
Only you get to decide how and when to offer up personal information and who deserves to receive it. As a recovering people pleaser, I used to tell people what they wanted to hear. Yet, I don’t always feel comfortable sharing every intimate detail of my health.
For me, gaining confidence when talking about my chronic illness has meant firming up boundaries and practicing speaking up. I’ve set communication conditions with those close to me, affirming that I will be the one to actively give health updates when it feels right for me. With my long-distance bestie, for example, I push myself to be more honest about how I feel since she can’t see how I am doing in person.
Staying quiet is also an important part of honoring my needs. Some friends don’t always react in the way I anticipate. While this can hurt, I’ve learned to control my information flow with caution. Those who respond with empathy and compassion have access to the fuller version of my reality. When people make me feel uncomfortable or blamed for my illness, I stick to my boundaries and honor my need for privacy.
Strengthen Your Bonds
Chronic illness tests your relationships. Giving as much as you can during the good times will go a long way when you need to be more unavailable during the tough times.
I’ve made big efforts to show up for my relationships in accessible ways. To make up for all the times I can’t be there in person, I commit to being a loyal friend. I never forget a birthday, I send texts on important occasions, and I share a steady stream of inside-joke memes.
Your communication patterns can also reinforce that how you feel doesn’t determine who you are. I used to be afraid the people in my life would get bored of hearing about my treatments, lack of improvement, or the daily grind of health maintenance. So I made sure to continue connecting over other interests, news and hobbies. What initially stemmed from fear ultimately served as an essential reminder of my identity. Continuing to foster multidimensional relationships helped me recall that my personhood extended beyond my body.
Chronic illness requires stretching your relationship skills, but you shouldn’t have to do it alone. If you feel an absence of compassionate curiosity or genuine support from someone you know, challenge yourself to have a frank conversation about what’s missing in your dynamic. After a failed second (or third) chance, it might be worth rethinking that bond. Even though it takes a lot of energy and effort to talk about my chronic illness, I’m grateful for the way I’ve learned to communicate on my terms and in my own way.
If you have a chronic illness, I’d love to hear about your struggles and successes when communicating with others. Share in the comments below!
Carolyn Rivkees is a DC-based writer and brand advisor focused on making well-being more accessible, less lonely and easier to understand. She is the voice behind Chronically Cheerful, an IG community that informs and inspires others living with health challenges. Read more of her writing over at her newsletter!