Breathing space: Advocating for CF needs without overexplaining

This is part of a series about living with invisible illness for Cystic Fibrosis Awareness Month. Go here to read more.

People don’t need to explain themselves when they need to take a lunch break to eat or sleep after a long day. That would be exhausting. How much more exhausting would it be to have an energy-devouring disease, yet still feel the pressure to explain yourself every time you care for your needs, like asking for extra rest, accommodations, or a slower pace in activities?

People with invisible illnesses like cystic fibrosis (CF) don’t need to imagine this — it’s often our reality. Ideally, we wouldn’t need to explain our needs at all. Alas, much more CF awareness is needed to reach that ideal. But can we at least eliminate overexplaining?

Overexplaining not only steals energy, but it also can make us feel like we need to apologize for needs outside of our control. In this guide, I share communication strategies that protect emotional and social energy.

Frame needs as a benefit for all

Have you ever gone on a difficult hike and realized everyone is struggling but no one wants to admit it? Maybe I’m projecting. Still, I’m usually met with agreement when I say, “Hey, a break would be good for everyone to refresh,” or, “Let’s take in this view before continuing.” Other times, if out of breath, I’d simply pause at a view with a “wow” and stand there, taking it all in (including all the oxygen I could possibly breathe!), and others would pause with me.

Those are all hiking examples, but you could apply this to other situations. Instead of asking open-ended questions like, “Does anyone need …?” be more assertive and say, “Maybe we should …” This invites people to match your rhythm without a forceful demand or explanation. Maybe you really are leading people in helping them realize what they also want, or maybe they’re simply picking up on hints of your needs. Either way, it’s rare that I’ve felt rejected in these requests, and I can feel less guilt about my needs because there is a sense of group benefit and shared decision-making.

Cue people with body language

About 55% of communication is nonverbal, so save your words. If you need to step away to cough, charade coughing, smile, then step away. Using nonverbal communication sends the message that you don’t want to talk about it. Smiling signals that you’re OK without their interference.

This isn’t about being cryptic. It’s about inviting others to connect the dots of your experience on a more intuitive level rather than needing drawn-out conversations.

Practice grace while setting boundaries

Not everyone will catch a hint that you don’t want to discuss your needs. I used to get prickly when people requested explanations for why I needed accommodations. In my job, though, I work with people who have other diseases, and I realized I’m as ignorant yet curious about their needs as people have been about mine.

For my mental health’s sake, I now try to assume that questions come from a place of curiosity rather than accusation. Still, you don’t owe anyone a drawn-out explanation.

Instead, recenter the conversation with a gracious, “Thank you for wanting to understand. What’s most important is that I need …”

This sets a boundary, recenters the conversation on your need, and avoids antagonizing curiosity.

Clearly state how others can help you instead of focusing on what you can’t do: “It would be helpful if we could take breaks during this activity” is more actionable than an explanation of CF fatigue.

Focus on feelings-based communication

People with invisible illness often feel that few understand we’re not making up our needs. Not many know what our physical symptoms feel like. But they have felt the same emotions of anxiety, hurt, frustration, and isolation, even if for different reasons. To bypass a lack of empathy about physical symptoms, invite others to instead empathize with your interior state by focusing on feelings.

Phrase needs like, “I’m feeling like I need to sit down — I’m overwhelmed.” Or, “I’m getting a lot of anxiety about how hard it is to breathe right now. Can we pause?”

Practice respect-demanding assertiveness

What do we do when someone’s insistent about demanding an explanation? When my outrage flares, I try to remember an argument will only steal more energy and could impede progress in meeting my immediate needs. I’m not naive; there are times anger must be expressed to achieve justice, but there are also times to practice gentle firmness, advocating that you need respect but resisting argumentation.

Be simple, direct, and calm to the best of your ability when met with resistance: “For my well-being, I need this break.” The first part of the sentence points to your inherent dignity and rights as a human, and the second reinforces that you are discussing a need and not a want.

Give these tips a try and know that although sometimes you may feel forced to overexplain, most people can catch a hint and back off. My hope is that both you and those around you will realize your CF care needs are as valid as any other person’s physical and mental health care needs.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.