A better life.
I have cystic fibrosis. I have lived with it for 28 years. Only in the last few months have I sat down to honestly compile what I have actually learned along the way. Long conversations with friends, hard questioning, and a lot of back and forth on what was real versus what I had been performing. What you are reading is the result.
The six pillars in this toolkit are not theory, and they are not a system I have been polishing for years. They are patterns I have noticed in my own life, put into words I can use, written so someone else can use them too.
This is not a wellness book. It is not a transformation document. It is what I now run my own life on.
If you are reading this, something is harder than it should be. The toolkit is for that.
Shrink the goal until it becomes doable. Small is not pointless when small keeps you moving.
When did CF make the future feel so big or impossible that you had to shrink life down to one next step?
When I was around 18 or 19, my health was bad and I was sleeping through the middle of the day because my body felt so heavy. I was home alone, too sick and depressed to train or do much of anything, so I shrank the entire day down to one task: get dressed, go upstairs, and eat. I think I made a sandwich.
It sounds small, but with CF, eating was not nothing. If I did not eat, I was only going to get weaker. That day, building the foundation looked like taking the smallest possible step and refusing to let the whole day collapse.
When did chasing the final outcome feel less useful than focusing on the boring daily actions that could get you there?
I remember going back to the gym after I had not been in a while, and I got emotional during the workout. I did not fully break out in tears, but I had a tear running down my face as I started thinking about all the times I had stayed away, not because I truly could not go, but because I had overwhelmed myself with the end result. Being fit, strong, healthy, and finally where I wanted to be.
I had turned the gym into this giant life project when really the task was much simpler: show up and exercise that day. That realization hurt, because I knew if I had focused on the boring daily action instead of the perfect future version of myself, I would have been much further ahead.
The lesson was simple. Stop worshipping the outcome and build the foundation one action at a time.
When was a day where you could not do everything, but you did one small thing that kept you from fully abandoning yourself?
There have been so many days where I did not want to exercise, eat, get out of bed, or do anything at all. But my nebuliser has almost always lived right beside my bed, and is still there today. That mattered. Even when I was too weak or too low to face the rest of the day, I could roll over and do my lung treatments.
It was not glamorous, and it did not fix everything, but it meant I had not fully abandoned myself. On some days, building the foundation was simply doing the one treatment I could reach.
Within your own limits, your body is capable of more than your fear tells you.
When did you move, train, stretch, walk, or exercise while sick because you refused to become passive?
When I was in hospital in my later teens and early twenties, I refused to stay still if I had any ability to move. I used to ask for a stationary bike in my room at the adult CF clinic, and even as a kid I would get up and walk around when I could instead of just lying in bed.
Outside hospital, I sometimes trained while sick because coughing hard and clearing mucus often made me feel better afterward, even if I pushed myself too far at times. I would never tell another CF patient to copy that extreme, but the principle still matters. Within your own limits, your body may be capable of more than your fear tells you. Movement was one of the ways I kept ownership of my body.
When did your body and lungs feel like they could not keep going, but your mind wanted to?
The last time I ever stepped on a rugby field was in 2018, during a bad chapter with my health. It was November, wet and rainy, and I remember trying to run at a local club practice, but I could not go more than a few seconds without coughing and stopping.
Eventually I walked off the field, went around the corner of a building, and cried while my friend Michael came to check on me. I think I packed up and left, and that was the last time I ever played.
I miss it, because that day did not just feel like losing rugby. It felt like CF had taken another piece of who I was.
What proves you built a physical foundation before you knew Trikafta would change your life?
I knew I had built a foundation by the way I bounced back after being sick or coming out of hospital. I would usually rest for a couple of days, but often zero days, then get myself back into the gym or back into sport because I refused to let sickness become my new baseline.
Those small returns mattered. The workouts I did not feel ready for, the days I moved when I was unsure I could, the moments I chose not to stay down. Over time, those decisions built something physical and mental in me. Sickness could still come in, but I had a foundation to come back to.
Hope and action are two sides of the same coin. Without hope, there is no reason to act; without action, hope has no use.
When did you realize one of your beliefs about hope, resilience, or strength was incomplete?
I used to think hope was useless because I confused it with wishful thinking. I thought hope meant sitting around, daydreaming about a better future, and using tomorrow as an excuse not to act today.
Then I listened to an essay that reframed it for me. Hope and action are two sides of the same coin. Without hope, there is no reason to act; without action, hope has no use. What I was really against was not hope. It was passive wishing.
When did fear motivate you instead of only stopping you?
My dad used to say fear is a great motivator, especially when I was playing rugby against guys much bigger than me. He would joke that fear made me run real fast, but there was truth in it.
Fear did not only make me avoid things; it pushed me to move, train, and refuse the version of myself that looked sickly, weak, or far below my potential. I understand there is ego and insecurity in that, but the deeper fear was falling short of the person I could become. Coughing, mucus, and not being the fittest guy were scary, but they were not scary enough to make me stop.
When did you get caught in anger, depression, or uncertainty, and what helped interrupt the loop?
In 2018, I was deep in depression. I was sleeping a lot through the week, drinking and partying hard on the weekends, making bad decisions, and eventually ended up in hospital because my health was poor. The drinking was not every day, but with CF, going that hard on weekends was more than enough to wreck me. I remember lying there and thinking, this does not have to be my life right now.
I knew I had goals, ambitions, and more capability than the hospital bed was allowing me to express, so I started paying attention to what I was saying to myself. At first, it honestly felt like lying to myself: telling myself I was the strongest, most invincible CF patient, even when I did not fully believe it. But that shift worked, because it gave me enough belief to start acting like someone who could turn his health around.
Let CF be part of the story, not the author of the entire book.
When did you realize CF shaped your life but could not be allowed to own your whole identity?
I was aware of my CF from as young as I can remember. Even playing soccer around six years old, I knew I could not run as long as the other kids, and I remember telling my dad that I was tired, tight in the chest, or out of air. He would not coddle me or immediately pull me off the field; within reason, he would tell me to keep going just a little bit more.
Looking back, I am so grateful for that because he helped me understand that CF was real, but it was not allowed to become the whole story. From very young, I learned that my condition shaped me, but it did not get to own all of me.
When did you want people to see you as strong, capable, funny, athletic, or fully human rather than just "the CF guy"?
I think I wanted to be seen as strong for as long as I can remember, but it became especially clear in my teens when I started playing rugby. Part of that was probably natural. I was a teenage boy and I wanted to be seen as strong. But part of it came from CF and from going through years where I had been depressed, sick, and struggling.
I did not want people to see me only as a struggling CF patient, and I do not say that because I think people battling illness are weak. I just wanted to be known as someone who fought, someone resilient, and maybe even someone younger CF patients could look at and think, I can be strong too. There was ego and insecurity in that, but there was also a real desire to be more than the illness people saw.
When did your body image make you feel less desirable, less masculine, or less confident, and what did you learn from it?
When I was sick in my teens and later teens, I felt so skinny that it affected how desirable and masculine I felt. That was especially hard because I was athletic, surrounded by friends who played rugby, trained, and looked much fitter or bigger than I did. I felt less than them, and at times I had almost no confidence.
Even now, although it is much better, that fear still lingers. I worry about losing muscle, losing weight, and looking sick again. What I have learned is that the body can heal faster than the insecurity does, and part of the work is not letting an old sick version of yourself keep controlling how you see your body today.
Openness is not about performing your pain. At its best, it is about giving your pain somewhere to go.
When did being open about CF help you instead of hurt you?
In my early teens, I started sharing more openly about CF on social media. At the time, I think it helped me less because I was trying to build some polished journey and more because it became a form of outward therapy.
I could take what I was carrying inside, the hospital stays, the fear, the frustration, the reality of being sick, and put it somewhere outside of myself. Of course I loved sharing my journey, but I quickly realized that being open helped me process what was happening. Sharing became one of the ways I stopped carrying everything silently.
What is one specific moment where your dad's steadiness helped you carry something you could not carry alone?
The honest answer is that there is not one moment with my dad. It has been every day of my life. He raised me as a single dad and was always loving and supportive, but never so soft that he let me hide behind my illness. He pushed me, challenged me, and demanded in his own way that I still be a normal kid.
He has been there in every moment, not as one dramatic rescue, but as the constant structure underneath everything. He is like the elevator shaft in a tower: the core strength of the building, my constant and forever rock.
When did another person with CF make you feel understood in a way others could not?
I lived a long time without really having CF friends, and my first close CF friend, Rina, was the first person who made me feel truly heard and understood in relation to CF. Other people loved me and tried, but they did not have CF, so there was always a part they could not fully replicate.
Having another CF patient to vent to, be angry with, be sad with, and celebrate wins with felt different. I already had a strong support network, and I was lucky to have amazing nurses, doctors, and medical professionals who made me feel heard too, but having another CF patient understand from the inside was a blessing. It made me feel less alone in a way ordinary support could not quite reach.
CF is not an excuse to be absent. People still need you. Show up. Just do it within what you actually have.
When did you realize you had used CF to justify selfishness in relationships?
There were times in friendships and relationships where I used CF to put myself first without fully realizing what I was doing. It was not some conscious plan where I thought, "I have CF, so I can do whatever I want." It was more subtle than that.
I was acting from fear. Fear about my health, my future, and what CF might take from me. And that fear made me justify choices that did not fully account for other people's feelings.
That was hard to admit, and I only really started acknowledging it last year I think. CF explained some of my fear, but it did not erase the impact my actions had on people who cared about me.
When were you too sick to participate, but still able to show up for people?
There were rare occasions where I could not play rugby because my health would not let me. Once, I had an at-home IV with a small portable pump attached to my arm, so playing was not an option.
But I could still show up to practice. I could stand there, watch, support my teammates, and still be part of the group in the capacity I had. That mattered, because showing up did not always mean doing everything. Sometimes it meant refusing to disappear just because I could not participate the way I wanted to.
What was the smallest way you could still support people when you were sick or in hospital?
When I was really sick or in hospital, there were plenty of things I could not do. I could not always go out, train, work, or be present in the way I wanted. But most of the time, I could still pick up the phone.
I could text a friend, call someone, ask how they were doing, or listen for a few minutes. I do not remember every hospital stay, and I am sure I did not do this perfectly, but I hope I checked in more than I remember. People deserve to know that your sickness has not made their life invisible to you.
One page per pillar. Six pages total. Answer in the book, in a notebook, or in your head. The point is not to fill in every line.
If a question makes you uncomfortable, that is usually the question you need to sit with. If a question feels easy, you might be answering the easy version of it. Slow down on the ones that bite.
You do not have to share any of this with anyone. The work is for you.
When everything is too much.
1. What is the smallest thing you could do in the next thirty minutes that would make tomorrow a little easier?
2. What are you avoiding because the whole task feels too big?
3. What does your bad-day minimum look like? Write it down, then put it within arm's reach.
The unglamorous daily commitment.
1. What movement is still available to you today, in the body you have today?
2. What treatment or daily action are you skipping that you know matters?
3. What is one piece of your physical foundation you have lost, and what is the smallest version of it you could rebuild?
Bend without breaking.
1. What story have you been telling yourself that is making things smaller than they need to be?
2. When was the last time fear pushed you toward something good rather than away from it?
3. If you spoke to yourself the way you speak to a friend with CF, what would you say right now?
Be a whole person who also has a condition.
1. Outside of being a person with CF or chronic illness, who are you?
2. What part of yourself have you been hiding because it does not match what people expect from someone who is sick?
3. What would you want a younger version of yourself to know about who they are, not what they have?
Let people in.
1. Who in your life actually knows what you are carrying right now?
2. Who needs to be told something you have been keeping from them?
3. If you do not know another person with the same illness, what is one small step you could take this week to find one?
Show up for people. Just do it within what you actually have.
1. Who in your life needs you to show up better, and what have you been telling yourself about CF to avoid it?
2. Where have you been one-way: taking support, but not offering it back to people who also have hard things going on?
3. What is the version of showing up that fits inside your actual capacity this week, and what does it look like in practice?
If you are still reading, thank you. I do not take it lightly that you spent this time on something I made.
The toolkit will not fix anything. The six pillars are not magic, and I am not someone with all the answers. What I can tell you is that the framework in here is the thing I use, on my own life, on the days I cannot think clearly.
Build the foundation. Slowly. Honestly. One pillar at a time.
If something in here landed, I would like to hear which pillar. You can find me at the address on the back cover.
I write about all of this in shorter form on Instagram. If you want to read the next thing I publish, or join the small community I am building for people doing this kind of work, the link is below.
I read every message.
Instagram · @joshuadmitchell