It’s Not Just Frustration

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I am tired of facing healthcare access issues only for someone on the other end to say it
must be frustrating. I am tired of schedulers, nurses, and other medical professionals saying it
sounds frustrating to not be able to get a sick visit for weeks or months. I am tired of people
saying it must be frustrating to not be able to access certain types of healthcare at all
sometimes and to lack continuity in my care. I am also very appreciative of the few that have
acknowledged how much of a problem it is and tried to help me find solutions. However, many
have simply apologized or said it must be frustrating and then not helped me further when I was
unable to schedule an appointment or faced other issues out of my control. It is not just routine
care or well visits getting delayed at this point. I have had multiple times in the last few years,
both pre-pandemic and during it, where I could not even get a sick visit for weeks or months
during an active infection with severe symptoms, including times where I was trying to get a
primary care visit following an emergency department visit for an infection. There have also
been times where certain doctors have been completely booked out for as far as their schedule
is open, meaning I cannot schedule an appointment at all until their schedule opens up for
further out. This means I either get put on a wait list or have to call back in a few weeks to try
scheduling then, with some practices not offering wait lists and making me responsible for
following up on my own about scheduling.
I am tired of people saying how frustrating and isolating it must be to not be able to find
primary care doctors and specialists who have heard of my rare diseases, let alone ones that
are able to more broadly handle a medically complex patient like me. I have been willing to see
doctors unfamiliar with my diagnoses in order to give myself more options only for doctors more
than once to suggest unprompted that I find a new doctor, because they found me too medically
complex to handle given their availability and experience and thought I might do better with a
different doctor. I was able to access multiple doctors across specialties back in pediatrics who
were experienced with my rare diagnoses. I had continuity in care with many of those doctors
throughout childhood, but then office policies within the departments and hospital system those
doctors belonged to prevented me from continuing to see them past a certain age. I have
continued to have issues accessing certain types of doctors years after aging out, including both
primary care and doctors within some specialities.
I am tired of people saying society will never accept us, that we will never find the cause
of our birth defects, or otherwise giving up. I am tired of watching people in my community lose
hope after being traumatized by our current healthcare system, whether defining community as
people who share my diagnoses, geographic area, fellow members of the LGBTQ community
(who sometimes face discrimination, microaggressions, and other issues when trying to access
healthcare), or other communities I am a part of. Plus, there are the ways groups I am not part
of are currently being or have historically been harmed by the medical community, even though
healthcare often saves and improves lives as well. I am tired of that mixed history not being
I am tired of fearing losing Medicaid eligibility, that my doctors will no longer be in my
already small insurance network, or that certain services will no longer be covered as I watch
the managed care plans and overall policies in regards to Pennsylvania’s various forms of
Medical Assistance change multiple times throughout the pandemic especially. I am tired of
coming across major hospital systems and clinical programs located in other states that accept
Medicaid, but not PA Medicaid, leaving me to either pay out of pocket (which I often cannot
afford) or go without the care I am seeking. I am tired of how many times there are billing issues
for services that are covered by my insurance and simply require the practice and my insurance
to talk to each other in order to resolve them, yet instead they call or email me about it. I then
have to call each party involved individually to try to moderate administrative and
communication issues that they should have been able to resolve without me getting involved.
To make an already preventable situation more stressful, there has been more than once where
I have been contacted about billing issues months after I received the services they are in
regards to and after I had already spoken to the parties involved previously to confirm coverage
or resolve billing issues for that particular date of service. This means I am then dealing with
healthcare access issues I thought were already resolved months ago. Research studies
usually have no cost to participants (sometimes transportation and certain other expenses are
not fully covered by research funding) and can be a good resource regardless. However, I am
tired of how many research studies and clinical programs require a letter from a physician when
applying or for a doctor to apply for me when I have been barely able to access doctors in the
first place the last few years and could really benefit from some of these studies I want to apply
to. I am tired of the main obstacle to joining certain studies being that they do not allow
self-referrals, or in other words, for the patient to apply on their own. Some studies do accept
self-referrals, but many do not.
I am tired of watching delays in care or going completely without certain types of care
harm my health. I am tired of having to buy device after device to monitor more of my vitals at
home and anything else I can think of to objectively manage my health without the help of
doctors as I struggle to access them or so that I can share my vitals with them during times
where all I am offered is a phone call or telehealth visit (as opposed to an office visit where they
can take these measurements for me). All these devices I use to measure my vitals were ones
either originally given to me by a doctor or something a doctor instructed me to buy over the
years, although I now use many of them often without being directly instructed to based on my
knowledge of when they can be useful. For example, I have a thermometer that was given to
me by a doctor years ago that still seems to be accurate and that I can use to confirm if I have a
fever or not if I feel warm when sick. I can use a pulse oximeter to make sure my blood oxygen
levels have not fallen dangerously low if an infection is leading to acute breathing issues
(medical professionals have previously told me what numbers to look out for) and my incentive
spirometer to further objectively measure any changes in my breathing. None of this should be
taken as medical advice, though. Keep in mind I am often still going to the emergency room or
otherwise seeking healthcare if I have a fever, acute breathing issues, or other severe
symptoms, but the pulse ox and other devices at least help me figure out how severe certain
symptoms are objectively, help me determine what level of care I should seek and how urgently
I need it, can be used to further monitor my health after being discharged from an ER or after an
outpatient office visit, and I can read the measurements from them to a medical professional
when I speak to them on the phone from home. It is especially useful to have my own devices
for monitoring vitals at home for when my symptoms are not at the severity level of needing an
ER and outpatient doctors have not called or messaged me back yet after leaving a message
for the clinical team at primary care or elsewhere. It was originally primary care that told me to
buy a pulse ox to monitor my vitals at home when they were mainly offering telehealth visits
earlier in the pandemic. Again, this is not medical advice.
My blood pressure cuff, pulse ox, and other devices for measuring my vitals objectively
at home alongside abnormal in-office measurements have for better or worse further shown how
my health has changed and declined in recent years. I am tired of having both subjective and
objective reasons to support why I say my physical health has been declining for undiagnosed
reasons the last few years only for some doctors to gaslight me. Other doctors do take me
seriously only for them to run out of ideas eventually for how to help me after going the extra
mile to brainstorm more treatments and tests to try. Unfortunately, those many tests have left me
still without a diagnosis for these changes in my physical health. I am appreciative of the
medical professionals that tried multiple ideas and worked hard to keep brainstorming before
eventually running out of ideas, though. There is a big difference between a medical
professional who is supportive, listens to what I say, and genuinely tries their best to help only to
run out of ideas compared to ones that have gaslighted me after barely getting to know me and
having spent only minutes interacting with me. I know I am medically not an easy case to solve,
although I need to keep doing what I can to improve my health, even if much of it remains a
mystery. The aspects that have been diagnosed are still not well understood and rarely have
active studies running for those diseases. I am tired of how little medical research focuses on
my diagnoses as well.
I am tired of people in the meantime using less powerful emotions like frustration to
describe a situation that has honestly become more and more dangerous for me. The overall
name for my rare diagnoses is VATER, although I have a long list of sub-diagnoses and an even
longer list of the seemingly unrelated undiagnosed physical health issues that emerged in the
last few years. Even if society is not ready to openly discuss birth defects like VATER that lead
to topics often considered gross like bowel movements, periods, and more organ systems than
the digestive and reproductive ones, for rare disease patients like me, we need doctors to at
least be aware of our rare diseases. VATER is also known as VACTERL and by multiple other
names, although like many other people, I do not have the birth defects that make up the C and
L in the larger acronym. VATER is often not listed when other rare diseases are listed by
non-profits, government organizations, and other groups. I have almost never met a doctor who
has heard of it, even though I find myself now years into adulthood. When I do meet a doctor
who has heard of it, they often are not aware of what the best treatments are for it and then
pressure me into trying treatments used for other diseases with similar symptoms that are
known to not work well or to not be helpful for VATER patients or they make misassumptions
like assuming I must have the full VACTERL set of birth defects instead of getting to know me
first. Some doctors also severely underestimated me when I was little, thinking my body would
never be able to do certain things that it was eventually able to do without any issues by only a
few years old. Occasionally, I meet a doctor who has experience working with VATER patients
and does not make these misassumptions, but that is unfortunately very rare and I aged out of
being able to see some of those doctors. It is much easier to find doctors experienced with
VATER in pediatrics than in adult care unfortunately and that is something that needs to change,
since VATER is something we face for our entire life and that can often continue to impact our
health significantly in adulthood.
It is not simply frustrating to have a rare disease that affects multiple organ systems, how
I respond to medications, and more go unrecognized. I have had doctors accuse me of faking
symptoms other doctors acknowledged I was not, including a time when I was having trouble
swallowing my own saliva or anything else for a few hours. A doctor accused me of refusing
food when an emergency room doctor later that day acknowledged I was not faking and
genuinely was physically having trouble swallowing at that moment. I have had doctors
misdiagnose me with more common diseases that present with similar symptoms to mine more
than once, then give me medications that I had major side effects from in order to treat the
disease they misdiagnosed me with. These misdiagnoses of diseases that present similarly
came years after my VATER diagnosis, which I have had since birth. More than once, I have
had doctors gaslight me when I was facing severe, visible symptoms that were not simply
subjective. This includes symptoms that can be objectively measured. This is not just frustrating.
It is traumatic and stressful. It erodes my trust and willingness to work with doctors when doctors
have also saved my life before. It makes me have to advocate for myself more than I should
have to, between the lack of recognition and my chart often not having an up to date list of all
my diagnoses. It means I have to do my own research on every medication and treatment they
suggest before saying yes or no. Recently, a medical professional was going to suggest a
medication to use to treat certain symptoms of an infection, but when I brought up how I had
heard of side effects from long term use of that medication and how I had been given that
medication multiple times over the last few years, they said I was right and then did not
prescribe it. I started doing my own research after much more severe examples occurred than
almost being given that medication again. I once had two doctors who worked together within
the same department try to pressure me into getting a surgery that would have lowered my
quality of life to treat a disease that was a misdiagnosis. They warned me of the specific ways
that surgery would worsen my quality of life and permanently physically change me, but they
also tried to say how not treating it would be worse. They tried to scare me into getting the
surgery with terrible images of what the disease could progress to untreated, even though
additional testing verified I did not have that disease to begin with and the symptoms that
prompted the misdiagnosis went away years ago without progressing to anything like the
images they showed me. Thankfully, I said no to the surgery and got a second opinion. Another
unrelated example is when I had a doctor give me a medication for pain without telling me that
was an off label use for that medication and about the possible side effects. I ended up having
severe side effects. Years later, I happened to read about how these same side effects I had not
been warned about had occurred in other patients given this medication when coincidentally
reading about it in a book for one of my sociology classes in college.
Between being pressured into a surgery I did not need, being misdiagnosed multiple
times, having known side effects to a medication that I was not warned about in advance, and
doctors already often knowing little to nothing about my rare diseases when they see me, I
make sure to do my own research now before agreeing to any new treatments. I should not
have to do that. I should be informed of possible side effects and such in order to give true
informed consent. I should not have to carefully keep track of every medication, test result, and
other piece of my medical record because I am too complex for medical professionals to
understand well enough to safely treat when only looking at my chart for a few minutes and
lacking the time per appointment or continuity of care over time to get to know me beyond a
quick glance at my chart and short conversations. I am not a doctor. There are certain things I
know from educating myself via reliable sources, having gone to college, having worked on
research studies myself and as a pharmacy tech, and from living with a rare disease so long,
but there is so much that I might be missing due to my lack of medical knowledge and not being
a doctor myself. One of my biggest fears is someday being in an emergency room unconscious,
unable to advocate for myself, because I have had to do way too much advocating for myself
already every time I seek care and my electronic medical records often contain missing and
inaccurate information after years of trying to get it corrected. That is assuming I am even able
to get a visit, since there have been many times I have been unable to access care at all when I
know I need it and even when a medical professional has said I need that type of care. There is
no one reason for my lack of access to healthcare. I wrote a whole piece a few months ago
about obstacles on the administrative level to receiving care, which was not an all inclusive list
I know that when someone says this must be frustrating, sometimes they mean it as a
way to show sympathy and sometimes it is just a show of good customer service. Sometimes it
is something they are trained to say, like how I was trained to make similar statements under
certain circumstances when working retail jobs. Sometimes it is genuine and more
spontaneous. Even when it is out of sympathy, I wish people would stop saying it and look at the
situation in more detail. There are many times when people have used the word resilient instead
of frustration. While it is true I have a lot of resilience, sometimes it has been used dismissively
as a way to end the conversation. I want the person on the other end to recognize things have
gotten worse than feeling frustrated or resiliently having survived so far. I want them to
recognize I need further assistance and that the problem is much larger than any emotions it
might spark. My health has directly been negatively impacted by delays in care, medical errors,
misdiagnoses made years after I was already diagnosed, trouble accessing healthcare at all at
points, a lack of continuity of care, and a lack of awareness of VATER and my sub-diagnoses.
Whether I was a rare disease patient or not, the overcrowding and understaffing of
hospitals is negatively impacting everyone. I have seen it firsthand and I have seen plenty of
news coverage to know how dangerously overcrowded and understaffed our medical system
currently is. This is not just happening in this part of the country or even just in the United
States. Look at what is happening lately in the UK, China, and other parts of the world as well.
Healthcare in its current form is failing people. We are sitting alone in hospital hallways not
interacting with staff for hours with our vitals left unmonitored instead of there being available
hospital beds. Sometimes, it is worse than that. One time recently, the emergency department I
went to was so overcrowded they sent people back out to the waiting room after triage, labs,
and imaging when the waiting room was already crowded to the point family members were
asked to wait outside the ED and there were almost no chairs left in the waiting room. We can
do better than sending patients back out to an already overcrowded waiting room with only one
or two nurses at a time watching over the many patients in that area. Not only that, but the
overcrowding also prevented quarenting the actively infected patients from the rest, so patients
were sneezing, coughing, vomiting, and more right next to patients there for reasons other than
infections. I felt so bad for my fellow patients, knowing I was one of the people there for an
infection. There was not even space to socially distance, let alone quarantine, with almost every
chair in the room full. When not in the emergency room, we are waiting weeks and months at
home getting sicker and sicker with lack of follow up or initial appointments with primary care or
GPs. There are plenty of issues beyond the overcrowding and understaffing, like how I am still
struggling to get different hospitals to share all of my records with each other after countless
phone calls, emails, visits to their medical records departments, and more. Sometimes the
charts just fail to recognize my medical complexity in its current form, like how there is a section
in the electronic records for allergies and current medications, but not past medications I took
too long to be safe to take again or had major side effects from that were not technically
Some say our medical system is not built to manage more than acute care, something
we even discussed in one of my college classes. However, that is not accurate either. Our
medical system has figured out how to manage certain chronic conditions that have big name
recognition, lots of nonprofits and resources supporting it, and many research studies on them,
like diabetes or cancer. You can find multiple clinics now for long covid, yet I have found none
for someone like me who has never tested positive for COVID-19, but continues to have
symptoms and health impacts post-infection from other identified pathogens. COVID-19, RSV,
and influenza A/B have gotten a lot of attention and resources dedicated to them lately while
people often struggle to get care for other types of infections and definitely do not have the
same level of resources available in outpatient care when a different pathogen is identified for
their infection. We have gotten somewhat good at treating certain diseases while other diseases
like VATER go unrecognized and barely studied. Many patients continue to be undiagnosed as
well for years when the cause of their physical health issue then turns out to either be a known
common or rare disease. We need to continue to help patients with diabetes, cancer,
COVID-19, RSV, influenza, and other diseases with big name recognition and continue to
improve healthcare options for them. However, there are so many diseases that often go
unrecognized and do not receive many resources dedicated to diagnosing, treating, and
researching them. There are plenty of severe diseases, rare or common, that do not receive the
resources needed while other diseases receive so much focus from non-profits, government
organizations, news organizations, etc.
There are way too many ways to fall through the cracks in the current system, whether
you cannot afford care, your disease is rare and barely recognized by the medical community,
you need something your insurance will not cover, or so many other ways. On the one hand, I
want us to finally acknowledge how dangerous the situation has become and not dismiss it as
simply frustrating. On the other hand, I want us to recognize the danger in order to be motivated
to finally take action to improve the situation. There are solutions to at least parts of this. We can
have developers code in parts to the software used in electronic medical charts to include
sections for previous medications at glance the way we do for current medications so I do not
have to fear being re-prescribed a medication I had major side effects from or took too long to
be safe to take again. We can add more rare diseases, including VATER, to existing lists on
websites from nonprofits and government organizations. We can keep saying VATER and the
name of the sub-diagnoses that are associated with it until it finally has the name recognition it
is lacking now. There are also people who have only one or some of the birth defects associated
with VATER, but not enough to meet the criteria for a VATER diagnosis, so the sub-diagnoses
need name recognition as well. We also need doctors to understand that there is a lot of
diversity within the VATER community. Just looking at the diversity within the birth defects
themselves and not just diversity within our community when looking beyond our diagnoses, not
all VATER patients present with the same symptoms, have the same medical needs, respond
the same to a certain treatment, etc. For all patients, we can brainstorm ways to redesign the
way healthcare is conducted to try to prevent overcrowding and months long delays. I believe
the situation can get better, especially if we recognize just how bad it has gotten. This is not
about emotions, as much as this situation can be stressful, scary, and yes, frustrating. At this
point, it makes me beyond frustrated emotionally. I catch myself sometimes feeling angry,
stressed out, and frightened by how bad things have gotten. Then, I remind myself of all the
ways I know we can fix this if we are willing to do the work and improve the situation. Please
help me fix our healthcare system so the next time I speak to a medical professional, they will
not have to apologize for how frustrating they assume the situation to be, because some of
these situations would no longer exist if we improve the system. Healthcare should improve our
lives, not traumatize and stress us out. Healthcare should help us be healthier, live longer, and
live our best quality of life, not have delays in care, preventable medical errors, and other
solvable issues that reduce our quality of life. We can improve healthcare, but we need to first
be willing to have an open conversation about how bad things have actually gotten.
I really wish I could stop focusing so much on healthcare. I miss the days when I could
go out and play multiple sports, sing in choirs, spend time with friends and family, go on dates,
work and go to school full time, and do so much more in life without my physical health getting
in the way. I was such an active child and teenager only for my health to decline severely in
young adulthood. I try my best to still work things into my life besides healthcare related things,
even if it is just finding a new show I enjoy on Netflix or teaching myself something new using
free online courses. I try to find courses that interest me on topics unrelated to healthcare, yet I
also find myself gravitating often to healthcare courses as well to better educate myself on it.
Learning about healthcare and the human body can be fascinating in its own right to me,
ignoring the personal benefits to being more knowledgeable in the topic. However, when I work
on healthcare related courses, it is just another example of too much of my life being
encompassed by healthcare lately with little escape. There are plenty of unrelated topics that
fascinate me as much as biology, medicine, etc. The problem is I often do not feel well enough
these days to even watch Netflix, although that is far from all the time. It is just very difficult to try
to take breaks from focusing on healthcare when I sometimes do not feel well enough to do
much of anything. Not feeling well then further motivates me to try to improve both my health
and my access to healthcare.
Since my health continues to be so poor for undiagnosed reasons and I continue to face
healthcare access issues, so much of my time is also eaten up by trying to advocate for myself
and do anything I can to improve the situation. Among other things, working to improve it helps
relieve stress and occasionally does lead to positive results. Sometimes this means doing tasks
directly related to accessing healthcare for myself, like when I have to make multiple phone calls
to the provider and my insurance when a prior authorization request is not put in when one is
required for the care I need. It could be following up when I do not receive a call or message
back from the clinical team at primary care when trying to schedule a sick visit for a new
infection. Over the last few months, I have also spent many hours looking on,
patient registry websites, and the websites of individual universities searching for any research
study that could possibly help me. Then, there is the time on top of that I am spending doing
broader self-advocacy work in hopes of helping more than just myself, such as writing pieces
like this one. Not only do I know that giving up and not working so hard to try to improve my
healthcare access situation will harm my physical health further, since I have seen how delays
in care have negatively impacted it previously, but I know many of these issues are affecting
other patients as well. I have to keep trying to improve things for both myself and my fellow
patients. However, when I am sick and barely feel well enough to do anything, I have to push
myself to make those phone calls, send emails to non-profits and others that could possibly
assist, and any other tasks I do to try to improve my health and access to healthcare. It ends up
eating the little amount of time I have where I feel well enough and have enough energy to be
working on anything, assuming I do not push myself too hard or get post-external malaise just
from these tasks. I miss the days when I could go to school, work, play sports and/or spend time
with friends all in one day and barely feel tired afterward and my health did not otherwise get in
the way. I used to be able to leave the house before the sun was up and fill my day with multiple
activities until after it went down. Now, I can often barely physically get through a trip to the
grocery store or a doctor appointment. I wish there was more to my life than sleeping, eating,
showering, watching Netflix, occasionally working in other things, and trying to squeeze in
healthcare related tasks when I can. If anything, it is how much work I have done to try to
improve the situation given the larger context of my health becoming so poor and struggling to
make any significant progress that is frustrating, though it is also so much more than simply