Training CF allies: Sharing the load in managing invisible illness

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

Like many with cystic fibrosis (CF), I often feel like a burden, and believe others are tired enough without me asking them to help me out. With an invisible illness, I assume I can get by with keeping the pain quiet, suffering in silence while working hard to keep up in life. That is, until I get so sick from burnout that my invisible illness becomes visible.

As my wife reminds me, “Your CF only ‘burdens’ me when you let it get too bad before letting me help.” 

CF’s physical inflictions drain enough of our energy without us also needing to “grin and bear it.” There’s a better way. 

Much of my energy has been reserved by training my friends in the ways they can best support me in situations both big and small. Following is a game plan on how to build a support network that takes weight off your tired shoulders.

Consider hosting a training party

You can use the tips following this section without throwing a party, but you might as well make things fun and give your support network a sense of community. Community efforts are better efforts, and a group might think of questions and ideas that individuals wouldn’t on their own. 

Be direct and say you’ve been struggling and want some help, or be indirect and promote on social media that you’re hosting a training on how to help people with all different types of disabilities. (If you take the latter option, tailor the training to be less focused on you, though sharing your experiences is a great way to emotionally connect with attendees.)

Cook or order your support network a meal, let them settle in, and pull up a slideshow.

Start with the why

As with most disability work, start with awareness. This is an opportunity to make your invisible illness visible. 

Many of my friends say they only realized how sick I was once I started carrying around supplemental oxygen, pre-lung transplant. They wish they’d known how tough things were, because they had energy to spare when I didn’t. They wanted to help, but I never told them how or that I needed it.

Take people through a description of just how tiring your disease is, emphasizing things like the frustration of invisible illness or the difference between tiredness and chronic fatigue.

Invite them to ask any questions about CF that have bugged them but maybe they’ve felt too awkward to ask. This is your opportunity to debunk misconceptions that have inhibited your support network from stepping up.

Be exact in what you want

I carried a chip on my shoulder for a long time because people my age rarely visited me in the hospital. Now I realize I often set the tone that I didn’t want visitors, saying things like, “Ah, it’s boring in the hospital. You wouldn’t want to come.” In my hesitation to receive, I set the tone that I didn’t want to receive.

So, be exact. Once your support network puts these things to practice, you might realize you need to alter support in some areas, but being vague from the start will leave people unsure about the boundaries of their involvement in your care.

Following are examples of ways people can help you:

Let them do the talking

Is it exhausting to constantly explain your condition to new people or in situations where the disease makes things awkward, like mid-coughing fit? Prepare a concise description of CF and its needs for your supporters so they can do the talking for you. 

Do you feel like a killjoy when your fatigue gets in the way of you saying yes to plans? Some friends took up the habit of saying, “I won’t let Brad do that. He needs to rest.” That way, I don’t feel like the party pooper.

If you’re nervous that supporters might step in when you’d rather they don’t, make code words or identify symptoms — exhaustion, coughing, etc. — to cue them on when to step in.

Establish a check-in system

Sometimes we just want to be treated like everyone else. Other times we want to be extra seen in our struggles. Setting a scheduled check-in time is helpful in building boundaries and giving you control over when your disease is discussed.

Energy saver

Want hands-on help? Delegate different tasks to others, like scheduling appointments, driving you to the hospital, or picking up medications (give pharmacies their name ahead of pickup). Or maybe you simply want help with everyday chores when you’re fatigued. Just one task per person will feel like a light lift.

It’s hard to ask for help, but we must recognize it’s hard for others to know where to step in. We can’t leave them guessing. It might feel awkward initiating a training, but remember your loved ones love you too. And keep your eyes on the prize: More energy means more life to be enjoyed.

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.