Being a Patient Is a Second Job Nobody Trains You For
- onsanchez
- Aug 23
- 8 min read
There are a lot of things people warn you about when you get cancer or another life-changing diagnosis.
There are things that you know are going to happen:
You know you're going to have a lot of doctor's appointments. You know there will be medications.
You know treatment is probably going to make you feel like garbage.
Depending on your particular flavor of cancer, you may be preparing yourself for chemo, radiation, surgery, immunotherapy, or some fun combination of all of the above. - In case you're wondering, I got the grab bag of fun-ness so I got to try all the different treatment options!
What nobody really tells you is that somewhere along the way, you're also getting a second job you didn't apply for. There was no interview. There's definitely no paycheck - I've checked. And the onboarding is terrible - very much a "figure it out as you go kind of" vibe.
Suddenly, in addition to being a person with a regular life, you are also responsible for managing an increasingly complicated healthcare operation - with little to no support or structure on the best path forward.
There are appointments to schedule for each of the doctors, specialists, and clinics.
Medications to keep track of.
Symptoms you're supposed to notice - which may be different than the ones that were outlined in the "pamphlet".
Questions you need to remember to ask.
Test results to understand.
Insurance to deal with.
Follow-ups to schedule.
Forms to fill out - so so SO many forms.
And then there are the conversations that you need to remember, summarize, and, of course, repeat back to all your family members. Here are some samples that I experienced recently:
What did my oncologist say about that?
Did I tell my other doctor about this?
When did that symptom actually start?
What date did I have that procedure done?
Was I supposed to stop taking this medication before that procedure?
What was the thing I wanted to ask at my next appointment?
Where did I put that information?
Individually, none of these things sounds particularly dramatic. Together, they're exhausting.
The job never really clocks out
The weird thing about this particular second job is that you never really leave "work". I mean, sure, you can leave the doctor's office, wrap up treatment for the day, and close the patient portal.
Just the other day, before I even started my regular workday, I had already checked a patient portal for an appointment time, searched for a test result, sent an email to the doctor's office, and tried to find a note that I took about a medication that I needed to update. None of this is treatment - it was just the work around treatment. Even though I was able to move on with my day, I could tell that my brain was processing the information and trying to find connections. The mental tabs stay open.
There's always something coming up and something that needs to be done. And when you're dealing with multiple doctors or specialists, the number of tabs multiplies pretty quickly - and in my case, it's about 30 tabs, with one of them playing music and another one playing some kind of ad jingle.
And far too often, the patient ends up being the person responsible for connecting all the different dots between the professionals who are supposed to be taking care of them.
With my professional background, I've joked before that being a patient requires project management skills, but honestly, I'm not entirely sure it's a joke.
There are dependencies. Timelines. Stakeholders. Risks. Follow-ups.
Apparently, my cancer journey just needed a Jira board.
The problem is that the person being asked to manage this incredibly complicated project is also the person who is sick.
I only have so much energy
One of the hardest things I've had to learn throughout my cancer journey is that my energy isn't unlimited - and there isn't a well that I can easily tap into for reserves like I used to.
There are days when I feel pretty normal. There are other days when I hit the wall, and that's it - I'm done. And it goes beyond the physical; the mental energy is often in short supply these days.
In the chronic illness community, they talk a lot about having only so many spoons - the spoon being a measure of how much energy it takes to do something, and you only get so many each day. For example, planning what to eat for the day may take one spoon today, but tomorrow may take three, and you may only have five spoons for the whole day. I bring up this example because everything you do takes energy - physical and mental.
Decision-making takes energy. Remembering things takes energy. Searching for information takes energy. Trying to reconstruct a conversation you had three weeks ago takes energy. Trying to find that appointment card that you swear you put in your purse on your way out of the clinic takes energy.
When you're already dealing with treatment, side effects, anxiety, work, relationships, and everything else that continues happening because apparently the rest of your life does not politely stop while you have cancer or another life-altering illness, those little tasks start to matter. And the impact of them adds up quickly.
So I've spent a lot of time thinking about a question that probably sounds incredibly boring: How do I get the things I need to do done while using the least amount of energy possible?
Because I don't want to spend all of my energy managing being sick. Like so many others in my situation, I have a life to live out there, places to go, and things to see.
Healthcare has plenty of technology
Riddle me this: how can one industry have so much technology and yet the technology doesn't play nicely together, often leaving the patient trying to connect the dots between all the different locations where information lives?
Let's just take a non-exhaustive snapshot of the environment that I'm living in right now:
Patient Portals - I have at least 4 that I access regularly
Calendars - Each of the portals has its own calendar
Summary Notes - love these so much as they make for interesting reads, but pulling out the actual useful bits can be extremely difficult.
Notes - I've got at least one notebook, my voice notes, my notes app, and a bunch of sticky notes.
Side story: I've even lost notebooks before, and it completely messed up my ability to track my journey, keep track of my questions, and capture answers for important items - not gonna lie, I cried for a week when this happened. It wasn't because I couldn't find the information again, but it was all the time and energy that the notebooks represented. It still makes me tear up a little bit today - it was like hours of my life were just gone.
But there was something else underneath the sadness too: I felt powerless. It felt like I'd lost my ability to advocate for myself because all the questions, answers, and the pieces of my journey I'd collected were gone.
And I'm just taking care of myself! And then I think about the people doing all of this for themselves and a child, parent, spouse, or other person they love. Suddenly that second job isn't even a one-person operation anymore.
All of these disconnected systems contain pieces of my healthcare. None of them really contains my experience of my healthcare. That's an entirely different thing.
And somewhere along the way I realized:
The patient is the integration layer.
We're the ones connecting the dots. We're the ones trying to make the whole thing make sense.
And we're trying to do it while trying to manage daily life on limited processing power.
Fortunately or unfortunately, I'm also a product manager in the healthcare space
This means a few things:
If something doesn't work, I'm gonna ask why
I firmly believe that sometimes we make things more difficult than they need to be
Eventually, I'm gonna get to the point where I can't stand it anymore and need to fix it
My patient brain and my product manager brain started talking to each other - often at 2 AM, often brimming with potential solutions to the problems that annoyed me most, and about a million questions like:
What information do I actually need to manage on a day-to-day basis?
When do I need it?
What am I constantly trying to remember?
What information am I constantly trying to find?
If a tool like this existed, what information could it house for me and make it easy for me to access?
What if I could add my own experiences while I'm in between doctor appointments?
These questions became the foundation for Health Harmony. I didn't want to build another place that generated more information for patients - there's plenty of that out there already.
I wanted to build something that helped make the information we already have easier to manage. A place where the pieces of your health journey could live together. A place that could help you remember what happened, rather than requiring you to reconstruct everything from memory. A place that could make walking into an appointment feel a little less like those timed multiplication sheets we did in 4th grade.
I want to be able to notice that I've been mentioning the same symptom for three weeks instead of realizing it when my doctor asks (or worse, a week later). I want to remember the questions I had at 2 AM when something was bothering me. I want to walk into an appointment knowing what's changed since the last time I was there.
That's what I've been trying to build!
I'm not out here trying to solve all healthcare's problems
There are enormous problems in healthcare - some big, some small, and some requiring an act of God himself.
Here's what I know: Health Harmony isn't going to solve all of them, and that's okay. I'm not setting out to solve all healthcare's problems. After all, I don't have infinite funds. I'm actually much more interested in solving a smaller, very human problem:
Being sick takes enough energy already. Managing being sick shouldn't take the rest of it.
There are things about this journey that I will always just have to do: appointments, medication management, regular testing, ongoing treatment, and really awkward conversations about my symptoms. I can't make all of that disappear.
But I can make some of the work required to manage it all disappear or at least become more manageable. Maybe I don't have to spend so much of my free time searching for information or relying on my memory to remember key milestones. I'm just looking to be able to close some of those mental tabs - maybe I'll even find the one with music playing.
Maybe being a patient can require just a little less work - not just for me but for everyone in a similar situation.
Health Harmony is live now, which means something I've spent a very long time thinking about is finally in the hands of actual people. And I'm excited to see what they teach me - because I'm not even going to pretend that I have all the answers!
I want to know it all: what helps, what doesn't, where something might be confusing, what is missing, and where additional friction points might be.
I want patients to have the information they need to feel informed and in control without healthcare management becoming another full-time responsibility. Because the goal isn't to help people become better project managers of their illness.
It's to give them fewer tabs to manage in the first place—and a little more energy left for the life happening outside of them.
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