Tick-borne Disease in Maine (Part Three): Living With Lyme, the patient's view
Author: Paula Jackson Jones
Orig Published: 10/06/2017
Imagine
being sick and your doctor unable to figure out what is wrong with you. Imagine
being sick and nothing relieves the growing pain and debilitating symptoms that
you struggle with every day. Imagine friends and family walking away all
because you’re sick and no one can figure out why.
Lyme
Disease is often called “the great imitator” because it mimics so many
different diseases. It can attack multi-systemic and vital organs. This not only makes the doctors jobs more
difficult when you do not respond to treatment, but as a patient, you quickly
discover how the medical community and even friends and family view your
illness.
Many of you
know my personal story ~ misdiagnosed for over 2 years by over 2 dozen doctors
and specialists before finally getting the correct diagnosis, in treatment for
over 6 years and now in remission. For
those who know me, know my journey was anything but easy. It’s not only the disease itself that
patient’s fight but against the stigma that they are crazy, depressed, and drug
seeking. When tests reveal there is nothing wrong with them, amidst the pain
and despair, friends and families turn away, no longer willing to tolerate the
complaining or the denial they perceive the patient to be in.
Photo Credit / Copyright: Paula Jackson Jones |
Last week, I shared about the controversy surrounding Lyme and explained the two standards of care. Doctors take the Hippocratic Oath promising to first do no harm but depending on which standard they follow, harm is sometimes inevitable.
All
lives matter ~ no matter the disease ~ all deserve compassion and the best
possible care made available to them.
Jenny
was an active youth, into softball, dance and theater. Ben ran a successful
telecommunications company out of state and summered in Maine. Angele was a
History major with a love for the Arts.
George was a successful entrepreneur with a lavish lifestyle. Stephanie was a Senior Business Analyst at one
of the largest health insurance companies in the country. Tracey was a
professional goldsmith, making beautiful jewelry. Thia was an active, energetic
individual who took her love for teaching to the highest level, obtaining her
doctorate, becoming a school principle with certification as superintendent by
the age of 35 and taught a graduate program at a local college. Hannah was a student full of life, light,
color and music, known for her warmth, compassion and understanding.
Real
people, educated people, with active lives, families, jobs and dreams.
Dreams
until unexplained symptoms began to occur and medical providers were unable to
figure out what was going on. Hundreds
of thousands of dollars spent on tests, scans, and medical visits all producing
more questions. Diagnoses didn’t fit and treatment options failed. Hijacked by an illness misunderstood by many
left them frustrated, desperate, clinging to whatever hope they could find and
all too often let down. Referrals to mental health providers left them feeling downtrodden.
Pleas to find out what was wrong was met with dismissal. Some were told by
specialists, without being examined, that if they were already treated then
they were no longer sick and in time would be fine. Some were refused further
treatment and office visits. Some dismissed as patients due to their
insistence.
What did
all these people have in common? They were sick, chronically ill, further
confirmed by tests and providers who not only had greater knowledge on
tick-borne disease but who took the time to treat them as human beings. Their
journeys to health and wellness have been ongoing. Some lost friendships along
the way. Marriages broken. Financial devastation. Suicide attempts. All because
they fell through the cracks of a divided medical society. They were mocked,
reduced and dismissed. Left to their own accord to either live out a debilitative
life or …
Sadly,
suicide is the second cause of death for so many burdened with Lyme and
tick-borne disease. The pain is too great and they lose faith in ever getting
better, lose their support system, lose financial provisions, their homes,
their marriages and all hope of life ever getting better.
I am
happy to say that I know each of these individuals and all are doing very well.
Some are still in treatment but ALL found a renewed strength from deep within
when connected to a provider and told “I’m not going to give up on you. We will
find the answer. Have faith.”
~ Paula
~ Paula
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