Because apparently having a chronic illness also comes with a job description nobody bothered to explain.
Dear Diary,
I have a question.
At what point did being a patient become a full-time administrative position?
Because somewhere between managing Crohnās Disease, Myasthenia Gravis (MG), scheduling appointments, coordinating treatments, reviewing insurance claims, and chasing down prescriptions, I apparently accepted a second career.
And I donāt remember applying for the position.
There was no interview.
No orientation.
No employee handbook.
And certainly no discussion about salary, vacation time, or benefits.
Yet here I am, reporting for duty every single day. šš
My official title?
Director of Medical Operations, Insurance Disputes, Appointment Coordination, and Other Duties as Assigned.
Department: My Body
Employees: One
Uninvited Consultants: Crohnās and MG
Annual Salary: $0
Overtime: Mandatory
Paid Time Off: Absolutely Not
And the worst part?
Even when I do everything Iām supposed to do, thereās no guarantee the system will cooperate.
Welcome to the administrative side of chronic illness.
The part nobody puts in the brochure.
š Congratulations! Youāve Been Promoted to Your Own Care Coordinator
When I was diagnosed with Crohnās Disease in 2003, I understood that managing a chronic illness would involve medical appointments, treatments, and lifestyle adjustments.
What I didnāt fully appreciate was how much responsibility would eventually fall on me to keep everything organized.
Fast-forward to life with both Crohnās and MG.
Now weāre talking about multiple specialists, different treatment plans, medications, laboratory testing, follow-up appointments, and medical equipment.
The gastroenterologist manages one condition.
The neurologist manages another.
The pulmonologist evaluates my breathing.
The ENT addresses issues involving my vocal cords.
And my primary care physician is supposed to help coordinate the bigger picture.
In theory, this sounds like a well-organized medical team.
In practice?
Sometimes it feels like Iām the only person attending all the department meetings.
One specialist may not know what another recommended. A medication change may require additional communication. A test result may raise questions that need to be addressed by another office.
And guess who ends up connecting the dots?
Me.
The patient.
The person who is supposedly there to receive care.
Somewhere along the way, I became the communication system between the people responsible for treating me.
I believe patients should be actively involved in their healthcare.
But involvement and responsibility are not the same thing.
I should be a partner in my care.
I shouldnāt have to function as the entire administrative department.
š¦ MyChart: The App That Never Lets Me Forget I Have Medical Problems
Letās talk about patient portals.
I appreciate technology. I really do.
Being able to review test results, request appointments, message providers, and manage prescriptions from my phone is convenient.
But sometimes opening MyChart feels like checking work emails on a Monday morning after taking a week off.
Thereās always something waiting.
A new test result.
An appointment reminder.
A message from a provider.
A prescription update.
A questionnaire that apparently needs to be completed for the 47th time.
And letās not forget the messages directing you to contact another department.
Because why complete one task when we can turn it into a scavenger hunt? š
Iāve previously shared my experience trying to schedule a pulmonology appointment while dealing with ongoing breathing concerns, only to discover that the first available appointment was months away.
But that experience illustrates something important.
Patients arenāt always scheduling routine checkups. Sometimes weāre coordinating care while managing symptoms that already affect our daily lives.
And when appointments arenāt readily available, weāre left figuring out what happens next.
Request an earlier appointment?
Contact another provider?
Ask about a cancellation list?
Follow up with the referring physician?
Suddenly, one appointment request becomes a project requiring multiple steps.
Patient portals may make information more accessible, but they donāt necessarily make healthcare easier to coordinate.
Sometimes they simply give us another place to manage it.
š Welcome to the Insurance Investigation Department
Iāve already shared some of my experiences navigating insurance denials, treatment costs, and the process of obtaining necessary medical supplies.
But what often gets overlooked isnāt just the financial burden.
Itās the time spent investigating, questioning, documenting, appealing, and following up on decisions that directly affect your healthcare.
A claim is denied.
Now I have to determine why.
Was it a deductible issue?
A billing error?
A coding problem?
A prior authorization?
Did the provider submit the claim correctly?
Did the insurance company process it correctly?
And why does every answer seem to lead to another phone number?
Suddenly, Iām reviewing explanations of benefits, documenting conversations, and trying to understand policies written in a language that apparently requires its own dictionary.
And letās not forget the famous phrase:
āYouāll need to contact the other department.ā
Of course I will.
Because apparently, the Department of Me has unlimited staffing and operating hours. š
Every unresolved claim becomes another assignment on a to-do list that never seems to get shorter.
And unlike an ordinary administrative task, these issues can affect whether someone receives necessary treatment, medication, or medical equipment.
Thatās what makes the burden so much more than an inconvenience.
š» The Mental Filing Cabinet Nobody Sees
One of the most overlooked parts of managing chronic illness is the amount of information patients are expected to remember.
When was your last flare?
How long did it last?
What symptoms were different?
Did the medication help?
When did you start the new treatment?
Have you experienced side effects?
What did the other specialist recommend?
And my personal favorite:
āCan you tell me your complete medical history?ā
Absolutely.
Would you like the short version, the extended edition, or the directorās cut with bonus footage? š
Because after more than two decades of living with Crohnās and navigating the additional complexities of MG, my medical history isnāt exactly a two-minute conversation.
And hereās something that doesnāt get discussed enough.
Sometimes thereās so much information during an appointment that remembering everything afterward becomes a challenge.
A doctor may explain test results, discuss treatment options, recommend another specialist, and provide follow-up instructions.
Meanwhile, Iām trying to absorb everything, remember my questions, and make sure I understand what happens next.
Then I leave and realize thereās something I forgot to mention.
Or a question I should have asked.
Or an instruction I need clarified.
And now Iām back in MyChart sending another message.
Itās not that Iām uninterested in my healthcare.
Quite the opposite.
Iām trying to keep track of an enormous amount of information while managing the symptoms that brought me to the appointment in the first place.
The appointment may be over, but the responsibility of managing what happens next continues.
š The Emotional Labor Behind the Administrative Work
Hereās where this conversation becomes bigger than paperwork.
Managing chronic illness isnāt just about completing tasks.
Itās about managing the emotions that come with them.
The frustration of explaining the same concern repeatedly.
The uncertainty of waiting for answers.
The disappointment when treatment gets delayed.
The anxiety of wondering whether something important has been overlooked.
And the realization that if you donāt follow up, an issue may remain unresolved.
But thereās another emotion that deserves attention.
The gradual loss of trust that can happen when you feel responsible for catching mistakes in your own healthcare.
After enough communication breakdowns or conflicting explanations, you may find yourself double-checking everything.
Was the referral submitted?
Did the prescription reach the correct pharmacy?
Did the specialist receive the test results?
Was the authorization approved?
Did someone document my concern?
And even when someone tells you the issue has been resolved, thereās sometimes that little voice asking:
Are you sure?
Not because youāre trying to be difficult.
Not because you donāt respect your healthcare providers.
But because previous experiences have taught you that assuming something has been handled doesnāt always mean it has.
That uncertainty can follow you long after an appointment ends.
Over time, the constant need to remain vigilant becomes emotionally draining.
Being an informed patient should feel empoweringānot like youāre personally responsible for preventing every possible breakdown in your care.
Thereās a difference between advocating for yourself and feeling as though you cannot afford to stop advocating for even a moment.
And that difference matters.
š¦ Meanwhile, I Still Have an Actual Full-Time Job
Now, hereās where things get particularly interesting.
Iāve spent more than 25 years in property management.
I know how to coordinate teams, manage competing priorities, resolve operational problems, and hold people accountable.
If a vendor doesnāt complete a job, I follow up.
If thereās a communication breakdown, I address it.
If something falls through the cracks, I work to correct it.
Managing properties requires organization, persistence, attention to detail, and the ability to solve problems when things donāt go according to plan.
Sound familiar?
Because apparently, those same skills have become essential to managing my healthcare.
But hereās the difference.
At work, those responsibilities are part of my job description.
When it comes to my healthcare, Iām the patient, the coordinator, the investigator, and occasionally the person trying to figure out why nobody seems to know whatās happening.
And unlike my professional responsibilities, this is one position I never volunteered to accept.
During a typical workday, I may be reviewing property operations, addressing staffing concerns, responding to ownership, or managing an unexpected maintenance emergency.
Then my phone reminds me that I need to contact a medical provider.
Or follow up on a prescription.
Or review a test result.
Or respond to an insurance issue.
And somehow, Iām supposed to fit all of this into the same 24 hours everyone else gets.
Iāve become exceptionally skilled at multitasking.
But thereās a difference between being capable of managing multiple responsibilities and believing the workload is reasonable.
Just because Iāve learned how to manage the chaos doesnāt mean the chaos should be considered normal.
And for patients without flexible work schedules, reliable transportation, financial resources, or supportive employers, these responsibilities can create even greater barriers.
This isnāt simply about inconvenience.
Itās about access.
š Patient Advocacy Shouldnāt Require a Second Career
I believe strongly in patient advocacy.
Itās one of the reasons I created The Dual Diagnosis Diaries.
Patients deserve to understand their diagnoses, receive clear explanations of treatment options, ask questions, and participate in decisions about their health.
But somewhere along the way, patient empowerment can become confused with shifting responsibility onto patients.
Thereās a difference.
Empowerment means having the information and support necessary to participate in your care.
It shouldnāt mean being left to coordinate every aspect independently.
Patients shouldnāt have to repeatedly relay information between specialists when secure communication systems are available.
They shouldnāt have to chase referrals without knowing who is responsible for the next step.
They shouldnāt have to spend hours deciphering conflicting billing explanations.
And they shouldnāt feel that persistence is the only way to be heard.
Self-advocacy is important.
But it should complement a functioning healthcare systemānot compensate for everything the system fails to do.
š» Making the Second Job a Little More Manageable
While Iām advocating for a better healthcare system, I also recognize that patients still have to navigate the one we currently have.
And until somebody approves additional staffing for the Department of Me, a little organization can help. š
Here are a few strategies worth considering:
š Keep an updated medication list. Include medication names, dosages, prescribing providers, and important changes.
š Create a brief medical timeline. Document major diagnoses, procedures, treatment changes, and significant test results.
š Write down questions before appointments. Prioritize the concerns you most want addressed.
š Document insurance conversations. Record dates, representative names or reference numbers, and agreed-upon next steps. Request important decisions in writing when possible.
š Ask for written follow-up instructions. Clarify what happens next, who is responsible, and when you should expect an update.
š Ask about care coordination or patient navigation services. Some healthcare systems and insurance plans offer support with referrals, appointments, and communication between providers.
And perhaps most importantly:
š Remember that asking for help is part of advocating for yourself.
These strategies wonāt eliminate insurance denials, appointment delays, or communication breakdowns.
But they may reduce some confusion while we continue advocating for systems that place less administrative responsibility on patients.
š¦ What Better Patient-Centered Care Could Look Like
Iām not suggesting healthcare is simple.
Medical professionals are managing complicated cases, heavy workloads, insurance requirements, and administrative demands of their own.
And I know dedicated healthcare professionals who work incredibly hard to support their patients.
But recognizing those challenges doesnāt mean we should stop asking how the system could work better.
Imagine if patients had clearer guidance about who coordinates their care.
Imagine if referrals came with transparent timelines and follow-up instructions.
Imagine if insurance explanations were understandable without multiple phone calls.
Imagine if specialists consistently shared relevant information.
And imagine if patients managing multiple chronic conditions had easier access to care coordination support.
Better yet, imagine if healthcare systems recognized that patients have lives outside their diagnoses.
Jobs.
Families.
Responsibilities.
Dreams.
And occasionally, a desire to spend an afternoon doing something that has absolutely nothing to do with medical care.
What a concept. š
Better coordination wouldnāt eliminate chronic illness.
But it could reduce unnecessary burdens.
Because the less energy patients spend navigating administrative obstacles, the more energy they may have for their actual lives.
And that matters.
šµ Music Playingā¦
āA Change Is Gonna Comeā ā Sam Cooke
Because advocacy isnāt always about fighting a single battle.
Sometimes itās about believing systems can improve, voices deserve to be heard, and meaningful change is possibleāeven when progress feels painfully slow.
Change doesnāt always happen quickly.
But that doesnāt mean we stop asking for it.
š Reflection Corner: Who Is Taking Care of the Patient?
Hereās the question Iāve been thinking about.
When patients are expected to coordinate appointments, manage prescriptions, monitor symptoms, navigate insurance, communicate between specialists, and advocate for appropriate careā¦
Who is making sure the patient isnāt overwhelmed by the process?
Who recognizes the time these responsibilities consume?
Who acknowledges the emotional weight of constantly managing the business side of being sick?
And who steps in when the patient doesnāt have the energy to manage one more thing?
I donāt expect the healthcare system to be perfect.
I understand that mistakes happen, delays occur, and complicated medical situations donāt always have simple solutions.
But I believe patients deserve a system that recognizes them as peopleānot collections of diagnoses, appointment slots, billing codes, and insurance claims.
I want to be informed.
I want to participate in decisions about my health.
I want to understand my treatment options.
But I also want to trust that the people responsible for my care are communicating with one another.
I want to leave an appointment without wondering whether I need to become the follow-up department.
I want to receive a prescription without investigating why it wasnāt processed.
And occasionally, Iād like to open my phone without discovering another assignment from the Department of Me.
Is that really too much to ask? š
The goal shouldnāt be to make patients better at managing a broken process. The goal should be to create a process that doesnāt require patients to work so hard just to receive care.
š¬ Letās Talk About It
If youāre living with a chronic illness, how much time do you spend managing the administrative side of your healthcare?
Have you ever felt responsible for coordinating communication between your medical providers?
Whatās one change that would make navigating healthcare easier for you?
Share your experiences in the comments.
Because when we share our stories, we help others recognize challenges they may have thought they were facing alone.
And when enough people begin asking for better systems, those conversations can become the beginning of meaningful change.
š Until Next Timeā¦
Living with chronic illness involves far more than managing symptoms.
It involves appointments, decisions, paperwork, communication, and a level of organization that would challenge even the most experienced project manager.
But patients are more than the responsibilities attached to their medical conditions.
We deserve time to live.
Time to enjoy our families.
Time to pursue our careers and interests.
Time to experience happiness without constantly managing the next medical task.
I donāt mind being involved in my healthcare.
I want to understand my conditions, participate in decisions, and advocate for my well-being.
But I shouldnāt have to become an expert in insurance policies, medical billing, referral coordination, and healthcare administration just to make sure my needs are addressed.
Iām already doing the work of living with chronic illness.
I shouldnāt have to do the healthcare systemās job, too.
And if someone could finally approve my request for additional staffing in the Department of Me, that would be greatly appreciated.
Preferably someone who specializes in insurance appeals, medical scheduling, and finding the hold music mute button. šš
Until next time, keep asking questions, keep advocating for yourself, and remember that your time, energy, and peace of mind matter just as much as the paperwork sitting in somebodyās inbox.
With love, strength, a little sarcasm, and a whole lot of purple. š
Kia Lorice
Founder ā¢ Author ā¢ Advocate ā¢ Future Wellness Coach
The Dual Diagnosis Diaries
Living with Crohnās Disease and Myasthenia Gravisāone day, one treatment, and one lesson at a time.
š thedualdiagnosisdiaries.com
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