The Hidden Mental Load of CF Care

In my opinion, the number one stressor for adults with CF is the silent mental load of CF care. The “BS of cystic fibrosis” is what I affectionately call it. I’m not talking about the physical act of taking medication all day long or spending hours doing airway clearance. Those acts can be stressful, but there’s a start and end to them that makes completing them every day just another check on the to-do list.

What’s even more soul-sucking is the constant battle to procure life-saving treatment while jumping through hoops created by companies who only see my life in terms of dollar signs.

The silent mental load of managing CF may be more destructive than the genetic mutation nowadays. But again, that all depends on the simple act of obtaining high-stakes medications.

How many insurance calls before I self-destruct?

During the past month, I have been on a mission to fill my Dexcom continuous glucose monitor at my local pharmacy. Sounds easy, right? You would think so, but it’s not. No one has any idea why the claim won’t process correctly. The kicker: 3 months ago I got my prescription with no problem. So what’s changed? Literally, no one knows. Not a soul.

You ask how is this possible? It’s very possible in the insurance claim world and if you’ve been here you know how true that is. After 3 weeks, multiple trips to CVS, and 4 conference calls with my case manager and insurance company, I’m still left poking my finger for blood sugars. I’m close to giving up.

Silent mental load is hard

My sob story is not uncommon in the world of complex medical needs. Frankly, it’s likely more common than uncommon. Many patients spend an exuberant amount of time fighting for the care, medications, and supplies they need with the insurance companies and convoluted agencies that are supposed to provide access to such life-saving treatment.

These types of patients make calls on their lunch breaks at work. They may make calls on the way home from school pick-up. Worse yet, they make calls with 2 kids screaming in the background because the only time they’re able to fit in advocacy is between episodes of Blippi and Goldfish Crackers.

In short, advocacy and procuring treatment to keep you alive comes at a cost. In these situations, the cost of life is again paid for by the time and physical and mental energy rewarded by treatments—or simply, life.

How to cope with the silent mental load of cystic fibrosis

Unless there’s a complete overhaul of our healthcare system that benefits patients (which I hope does happen one day), I don’t foresee the suffocating silent mental load of chronic illness disappearing any time soon. It beckons the question, how do we navigate and cope with the silent mental load head-on? Here are my tips for coping:

You are not alone

I will say this once: YOU ARE NOT ALONE IN THIS STRUGGLE. Our CF care teams (social workers, respiratory therapists, pharmacists, etc.) are equipped to help solve issues such as these. Ask for assistance when you need it.

Call in reinforcements

When in doubt, go up a level higher on the chain of command. If you have exhausted your CF care team’s help, don’t be afraid to ask for your insurance’s benefits manager, call CF Compass and ask for their help, or if you have a case manager ask them to conference call with you. Gather the people you need on your side to make a difference in your advocacy.

Make it as mainstream as possible

Make ordering your meds and equipment as easy as possible. That means auto-refill and ordering a 3-month supply when you can. The end goal is less thought and fewer phone calls to make it as easy as possible.

Do you struggle with the invisible mental load of CF care? What are your tips? Share with us below!