Why Patient Input is Pretty Much the Only Thing that Matters

Patients are the ends to the means in chronic illness. Every single thing that happens in cystic fibrosis (specifically) – from research, fundraising, drug development, policy decisions, conversations, to treatment time and everything in between – revolves around the patient. It is a delicate system that can ruin a life or, when working properly, save one.

Patient input is pretty much the only thing that matters.

Patients know when we are getting everything we need, when we’re being taken advantage of, treated unfairly, smothered or set free.

Yet, we’re told that we need to look at things objectively?

For reasons beyond me, people struggle to see patients for what we are: educated, empowered and experts. There are times when there is a reluctance to treat patients as equals. Is it because we don’t have an MD following our names?

I could have gone to grad school, or professional school for that matter, but I had this realization that I am equipped with the tools necessary to provide for myself. I am capable of learning whatever I need to, whenever I need to and however I need to. Simply put, why would I spend $200,000 to get a few extra letters attached to my name when I could teach myself anything I want to? All that’s required of me is a intuitive drive to thrive, and I think that’s something that runs parallel to my CF – I am forced, day in and day out, to pursue things that are in my best interest.

Beyond all of that, I have the experience any successful researcher, doctor or provider craves. I live with the illness 24/7/365. I have for 27 years and will for the rest of my life. I know when my health is improving, crashing or staying stable. It’s not too hard to pinpoint an issue in my body, right down to the specific organ or body action. I am so in tune with my body that I can tell you when I’m about to cough up blood, minutes before it happens.

Seems strange? Probably… if you’ve never lived with CF. If you find yourself in that category, well then guess what, you’re never going to leave it.

For example, the self realized fear in coughing up blood for the very first time is like nothing I have ever experienced. It’s so individualized that I know people who are not living with CF have no possible idea what such an experience may feel like.

Disregarding a patient’s perspective in favor of self-proclaimed experts is how we fail our patient community. For example, the doctors who work with patients are the very best ones in their profession. This principle extends to everyone inside our world – from advocacy groups to parents and doctors alike. That’s right… parents are not excluded from this point.

My parents, more so than anything else, have empowered me to be a vocal advocate for my rights and personal self-interest. I implore parents raising little ones with CF to do the same thing. Eventually your little one will so very much crave independence from the nest that they must be prepared to be a self-serving individual. Like all adult cystic fibrosis patients, children must learn to be the experts that they so rightfully can be. Much of that experience, whether we like it or not, will happen naturally. The first time little Jimmy coughs up blood, or when he gets himself into a coughing spasm so violent, it forces a mucus puke.

Every little moment that a person living with CF goes through, alone or under the guise of the support system, is what creates our expertise. The first time I coughed up blood I was on the football field with my friends and coaches, miles away from my parents. The first time my g-tube fell out, left to fend for myself in the company of a few freaked out roommates. The first time I nearly cracked under the physical and emotional pressure of rapidly decline health, I was alone in my room.

No matter how loved patients are, cystic fibrosis remains lonely. From that loneliness we learn how to be advocates, experts and self-sufficient. We learn how to be hard. We learn how to be relentless and resilient.

The patient is the ultimate end to any mean. Every single part of the discussion surrounding our chronic illness, pursued care, coverage, fundraising and empowerment directly impacts our trajectory through life.

It’s the ultimate credential in our community and there is no comparison.

The doctors, care teams, parents and organizations that understand the above principle are the most successful.

The doctors, care teams, parents and organizations that fail to gather the pulse of the patients, patient community and personalized needs are the ones who fail.

Those who narcissistically believe that they know what’s right for patients are the ones who do more harm than good. Although we are apart of a community and many of us have tremendous support systems and teammates, we are ultimately alone in our thoughts and personal battles with cystic fibrosis. We all have individualized needs, and I want the people who aim to help us to understand that.

There isn’t a single person out there who can make my CF go away, and that’s okay. I know my support system is there to motivate me, and guide me through this hell so I come out on the other side unscathed… if they can see me for what I am – an empowered patient who knows what’s best for himself.