Why We Need to Bring Our Chronic Illnesses Into Conversation

“I didn’t know you had lupus,” friends say when I tell them I have a chronic autoimmune condition.

I know you didn’t know I have lupus. You didn’t know because I just told you and plus, I don’t look like I have a chronic autoimmune condition.

When asked about lupus, I might give the stock medical answer: lupus is a condition that causes one’s immune system to work against healthy tissue in a person’s body. The symptoms range from mild to severe (though I usually brush over the severe symptoms because one, I haven’t had any of them [thank the Lord] and two, it just worries people).

Have you ever been in this spot before? Chronic illness is one of those bombshell topics of conversation. It lands in the middle and no one is sure what to do with it. It can explode into being too intimate, which can leave you feeling embarrassed, or highly clinical, which can leave you feeling like both a doctor and a patient. Sometimes, it’s just a dud. You mention what it’s generally like to live with chronic illness and then change the topic.

However, I’m interested in bringing chronic illness into conversations. Because a conversation about chronic illness is not just about the illness itself — it’s a much deeper and more intimate conversation on limitations. And we all have those, right?

“But, that is so awkward and really vulnerable and too personal! Do people really want to know why I sleep 10 hours and still don’t feel energized? How could telling someone why I can’t walk long distances be beneficial to a conversation?”

I hear you. The last thing any of us want is people’s pity. What we want is their understanding. Understanding comes through conversation. Understanding can change the climate for people with chronic illness.

I know that living with a chronic illness is a journey: the way I talk about my lupus is not the way you might be ready to talk about your illness — that is OK. Wherever you are, take a moment to consider the power your story can have in a conversation.

1. Invite questions.

None of us are medical experts, but we’ve had enough doctor’s appointments to know what’s up. Often, people hold back on questions or change the topic because they don’t know if questions will offend you. Most people are curious or, in my case, haven’t heard of a person who lives with lupus that is under 30. When I tell people I am 110 percent comfortable with talking about it, they relax a little and ask questions.

2. Share the parts of your story that are personal for you.

By this, I mean share the parts of your story where you might have experiences or revelations. For me, I shared the story of how I went from doing physical therapy for my hips to recreationally swimming to eventually doing a 4K mud run. I have a friend who is a track and field athlete dealing with a recurring injury. By sharing my own journey, I helped her realized that she could appreciate how much she is improving rather than dwell on how much she used to be able to do. Stories are powerful!

3. Be a voice for those who are less able-bodied.

I talked to a woman once who had an amputated limb, and instead of viewing her disability as a barrier, she saw it as an advocacy tool to lobby for better construction and campus planning of the university where she worked. Living with lupus has shown me how I can offer my perspective to those who don’t understand what it is like to live and move differently in the world. When we share our stories of aches, joint pain, medication woes, sleeping woes and small victories, we are giving another side of a picture that often focuses on encouraging people to do more. We are a voice that says, “Hey, some of us need to slow down, and that is OK.” Not everyone can lend this perspective, but that person to do it could be you! Yay, advocacy!

4. Share coping strategies.

I remember talking to another friend who had a chronic illness and we were describing our pain levels and what we would do to alleviate it. It was honestly a really fun conversation. We discovered we had different metaphors for our pain (baseball bat bruise and wailing siren) and our coping strategies were different: warm towels vs. a foam roller. These discussions don’t even have to be with a person who has a chronic illness. I’ve learned stretches from a retired gymnast friend, breathing techniques from a friend who manages anxiety and basic mindfulness strategies about monitoring my energy from my mom.

Whether you follow the suggestions above or use your own strategies, know that your chronic condition is not something to be afraid of in conversation. The illness is a part of us and can eventually be worth sharing as a point of view or wider conversation starter about how we care for ourselves and understand our limits. Do you have a way you talk about your condition in conversation? Comment below!

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