Throughout my life, one word has followed me around: compliant.

My doctors used it as a compliment, my parents repeated it with pride, and I happily welcomed it as part of my internal narrative. I was the kid who always did her treatments, took her medications on time, listened to doctors’ advice, and followed the plan. In the world of chronic illness, being labeled as a “compliant patient” felt like the highest form of praise.

On one hand, this label helped me stay consistent and gave me a sense of control over a largely uncontrollable illness. On the other, it quietly tied my worth to how well I performed.

From the outside, the plan seemed simple: follow the routine given to me by my doctors. But what the plan didn’t capture was the invisible negotiation happening inside my mind every day.

Years later, when I was diagnosed with attention deficit hyperactivity disorder (ADHD) as an adult woman, a lot of things started to click into place. The tension I felt with my CF care wasn’t because I was doing something wrong. It was because I was working against my brain in many ways.

The Invisible Mental Load

Both cystic fibrosis and ADHD are largely invisible illnesses. On the surface, I may look completely fine. But like an iceberg, what you see is only a small fraction of what’s actually happening. Below the surface is where most of the work lives -- the constant mental effort required to manage two chronic conditions at once.

CF care is not just treatments, pills, and doctor’s visits. It is a continuous stream of small, high-stakes tasks like:

• Remembering to take my morning and night medications
• Tracking refills before I run out
• Coordinating pharmacy calls and insurance approvals
• Scheduling appointments months in advance
• Planning my day around treatment time
• Thinking about long-term health and future planning
• …and dozens of other small decisions every single day!

Individually, none of these tasks seem incredibly overwhelming. But put together, they create a constant, never-ending to-do list that I am solely responsible for, and the consequences of dropping the ball are real.

CF and ADHD also compound each other. ADHD makes it harder to start tasks, maintain routines, remember details, and follow through — especially when something feels repetitive or overwhelming. These are the exact skills it takes to manage CF.

There are moments when I sit on the couch and think, over and over, “I need to start my meds.” And, still, I can’t begin. Not because I don’t care, but because my brain feels stuck. Other times, I realize I’m about to run out of medication because I forgot to refill it. Cue panic mode! These are the parts of me that people don’t usually see.

The Emotional Side

I’ve realized that the hardest part for me is not the routine itself, but how I feel about it. There is a lot of internal pressure – largely self-inflicted, but also shaped by messages from society, doctors, school, and family over the years. I’ve thought to myself…

• “Why can’t I just start?”
• “I should be able to do this.”
• “Why am I so lazy?” 

What I am just now coming to understand is how much of this was shaped by being a woman with undiagnosed ADHD. Women and girls are far less likely to be diagnosed with ADHD in childhood. We are often quieter, more inattentive, and better at masking symptoms. We figure out how to get things done to appear like all of the other “put-together” women we see, even if it takes more effort. And when things feel hard, we assume it is “just us” and our personal failures.

What I’ve learned through therapy and coaching is that shame is very common with ADHD, and it creates a vicious cycle. You fall behind, you feel ashamed, you avoid doing the thing because it feels bad, and then the bad feeling builds. And when the thing you are avoiding is your health, it feels even worse. Shame is a complex and deep emotion — while guilt is feeling bad about something you did, shame is feeling like there’s something wrong with who you are.

For me, it was never just about procrastinating starting a treatment. It was the feeling that I was failing at something I was supposed to be good at. Something that really mattered to me and all of my loved ones – my health. That is a heavy weight to carry, and it’s something I’m working hard to unravel. I’m not lazy — I have ADHD!

Rethinking “Compliance”

Getting diagnosed with ADHD changed how I see myself and my CF management. It gave me language for why things felt harder than they looked. It let me breathe a sigh of relief – it wasn’t “just me.” It helped me realize that all of the effort I put in each day counts and should be celebrated, even if no one else can see it.

I also started to rethink what compliance means for me. It is not perfection, and it’s not doing all of the things I need to do in one day. Compliance is not my identity, because care tasks like CF treatments are morally neutral. They do not make me a good or bad person; they just are. Compliance means doing the best I can, and my best can look different each day.

I’ve discovered that I have to make my routines work with my brain instead of working against it. Some things that have helped me:

• Get support: Therapy, psychiatry, ADHD coaching, body doubling to help with follow-through
• Reduce friction: Use baskets in place of “doom piles,” keep meds visible, use an AM/PM pill organizer
• Fuel your brain: Get lots of protein and water throughout the day (and set reminders!), stock up on easy grab-and-go snacks and meals
• Get out of your head: Use to-do apps and running lists so everything isn’t in your head, practice mindfulness and meditation, journal it out
• Automate what you can: Set up recurring refills, bill payments, and subscription orders to reduce daily decision-making
• Lower the bar to start: Focus on the smallest first step instead of doing it all perfectly
• Stay flexible: Miss something? Adjust and keep going instead of starting all over or spiraling
• Work on shame: Notice the shame cycle and prioritize being kinder to yourself

I also leverage my support network constantly — my husband, who is my ‘round-the-clock supporter; my family, who helped me build routines early on; therapists and coaches, who helped me work through shame and perfectionism; and doctors, who help manage my health.

I’ll end with this: if you are someone with CF and ADHD and struggle with starting treatments, procrastination, or feel shame for not doing everything “right,” you are not alone. The version of you that shows up in clinic or checks off your to-do list is only part of your story. I know there is a whole layer of effort that lies hidden underneath.

You are a whole person, navigating something complex, doing your best in ways that are often invisible. I see you, and we’re in this together. 

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