"You Just Need to Lose a Little
Weight"
Pretty much everyone I know with
#arachnoiditis or other undiagnosed
#chronicillness or #raredisease has a story of being disbelieved, mocked, been labeled as a "drug seeker " or malingerer at some point when seeking a diagnosis or going to ER because #pain has become unbearable.
I have many stories to share of my
own experience with gaslighting and disbelief by healthcare providers
Here's one:
After 7 years of seeking a diagnosis
unable to tolerate sitting or standing
with a drop foot, I had gone from
doctor to doctor without a good
diagnosis. Then one day I woke
up unable to move my legs, sit or
go to the bathroom and was taken
by ambulance to a nearby hospital
where an MRI indicated that the
acute problems was caused by 3
discs that had extruded (maximally
herniated, all 3 at once).
The MRI also showed Arachnoiditis,
a progressive, highly disabling
neurological disease that to date
has no specific treatment or cure. It
had been the underlying problem all
along.
The doctor on the General Medicine
floor I had been placed on, sent in a
physiotherapist to "treat" me before
had even heard my diagnosis. I
asked her to wait until I spoke to the
doctor about Arachnoiditis; what
it was, what treatment there was
and what the physiotherapy being
offered would do to help me. The
physiotherapist asked me if I wanted
to speak with the doctor, and when
hesitated, she urged me saying
he was "right around the corner, no
problem." So I agreed.
Only a moment later, the doctor
came angrily to my bedside and
said I had "Arachnoiditis ". This
nephrologist, the attending on the
Gen Med floor looked down on me
when I asked him what that was.
"It's just some inflammation in the
nerves in your back. It occurs often
in women who need to lose weight,
he dismissively told me. "Lose some
weight and it should go away just
fine." On that, he turned on his heel
and walked out. I was confused and
angry. How could all this pain and
disability be caused solely by being
overweight?
Arachnoiditis is an incurable
progressive, highly painful and
disabling condition caused by
inflammation and scarring of the
nerve roots, where the spinal nerves
exit the lower spinal cord and
become adhered to one another
causing tension and interfering
with the blood circulation of the
spinal nerve roots. Neuropathy, high
intensity chronic pain caused by
myofascial tension, cerebrospinal
seepage, inflammation and electrical conductivity changes all lead to significant disability and suffering.
There is no effective treatment or
cure at this time. Pain relievers
anti inflammatory medications and
an anti inflammatory diet, along
with mobility and other pain and
fatigue sparing devices are the
only solutions that the medical
professionals can provide at this
time.
But yeah, I guess all I had to do was
"lose weight."
Gaslighting, misdiagnosis and claims of malingering are typical responses from uneducated physicians and other healthcare providers.
Arm yourself with credible information to share with those who dare dismiss you and your suffering despite their ignorance and their need to label the unexplained and unknown rather than accepting as truth the symptoms you report.
Comments