Between the physical and emotional symptoms,
constant doctor appointments and numerous tests and procedures (not to mention
keeping track of it all), being chronically ill can become a job in itself. We
may find ourselves needing to cut back on hours or stop working altogether due
to the demands of our conditions.
As if having a chronic illness wasn’t enough,
the burden we face in managing the health care system itself is massive. We
navigate through a maze of doctors, administrators, insurers, and pharmacies.
We act as go-betweens because none of these people want to talk to each other
either.
Many hours not spent at actual medical
appointments or testing are usually devoted to requesting and tracking down
information, referrals, prescription refills, test results and what they mean,
and soliciting follow-up medical advice from providers. I am often expected to
be the conduit between my providers and my insurance company, instead of them
communicating directly to each other. Thankfully, my husband takes on most of
these calls. He is better at maintaining his composure at the frustration than
I am.
The health care system uses up a precious
resource: our time; the time it takes to check the status of the prescription,
to wait for a doctor, to take time away from work, to sit on hold and hope that
this one can finally answer your question. We do have lives outside our
doctors’ offices.
The system is inefficient and that leads to a
lot of wasted time. Establishing a more efficient system that fosters open
communication and transparency in the network involved in patient care will
create a more positive outcome for everyone involved and a better outlook for
patients, who can instead focus on their healing and health.
We fight daily to be able to understand our bodies and to do things others take for granted. Why do we have to fight 'the system' too?
