Just over 7 weeks ago, I finally met with a specialist in environmental medicine
who diagnosed me with Environmental Sensitivities/Multiple Chemical
Sensitivities (ES/MCS). This has had a positive impact on my experience and
understanding of my illness, especially after being told repeatedly by my
family doctor that my symptoms were in my head, that I was mentally ill and
that nothing was wrong with me. My relationship with my family doctor over the
last 19 months has been quite antagonistic and I am just beginning to work
through the pain, frustration, and extreme invalidation that I have experienced
within the context of our doctor/patient relationship. As a starting point for
that healing process, I want to write out my experiences and share my story
here.
Prior to my chemical injury in May 2013, I never really had any major
health issues. I had been managing malabsorption issues (iron, B12),
irritable bowel syndrome, and fibrocystic breast disease for a number of years,
but nothing so serious that my life was significantly disrupted. The main
symptom of concern that I presented during my first visit to my family doctor
was an extreme heightened sense of smell. I smelt everything, all the
time and it was somewhat distressing. It was as if a switch had been
turned on. I could literally smell air fresheners inside of people’s
homes from across the street if they had a window open. I could no longer walk
to work because my senses were just overloaded. The downstairs neighbor’s
laundry detergent and scented cat litter (which I never noticed previously in
the two years we’d lived there) was suddenly seeping into our apartment. My family doctor’s initial response was, “oh, I know exactly what you
mean. When I go to the mall, I can’t even walk past Bed, Bath and
Beyond."
Wait? What? Did she really just
say that to me?
I could hardly believe that she was trying to relate to me in this way. In
the 12 years that she’d been my doctor, she’d never really been particularly
friendly or engaging and on this particular day she decided to downplay my
experience by normalizing it with her own and sharing a personal analogy. Once
she stopped talking about herself and her own challenges with perfume and
reviewed my file (family history of brain aneurism) she decided that we should
rule out brain tumor, because apparently brain tumors and brain clots can cause
heightened sense of smell, so she sent me for an MRI. This was an
appropriate first step, but I was on the waiting list for an MRI for 7 months.
Shortly after my first appointment, I visited my doctor again presenting
with a broad range of physical and neurological symptoms that seemed to be
related to the heightened sense of smell, such as dizziness, headaches,
fogginess, musculoskeletal pain, neurological stupor and nausea. By this time I
had done a quite a bit of research online regarding my symptoms and came across
the Environmental Health Clinic (EHC). I printed off the information about the
referral process and presented it to my family doctor. She had not heard of the
EHC, but said she would review what I provided and get back to me. Rather than
considering the possibility of an environmental illness, she determined that I
had allergies. This theory made no sense
to me whatsoever since I had no rashes, no wheezing, no itchy eyes, no runny
nose – the sort of symptoms that might be treated with anti-histamine. But she
was convinced it was allergies, so she referred me an Allergist. The Allergist
confirmed what I already knew – my symptoms were NOT an allergy response. In
fact, the Allergist had his own ideas about my symptoms. He believed that
I was suffering from migraines and he referred me to see a Neurologist.
I got really sick at the Allergist’s office because of air fresheners in
the bathroom at his office and was out of commission for days following that
appointment with my usual symptoms, plus a migraine. I had only ever had one
migraine in my life, but following my chemical injury, migraines had certainly
had become commonplace. The migraine theory gave me hope and I started paying
closer attention to my migraines and determined that they coincided with really
specific exposures, namely solvents and petrochemical products, but there were
always other symptoms present that were not consistent with the migraine
diagnosis.
After my family doctor received confirmation that I was not suffering
from allergies, she agreed to put in my referral the Environmental Health
Clinic and I was very happy despite being told I would be on the waitlist for
up to 18 months. That is a really long time to be waiting to see a specialist,
so I put my energy and hope into seeing the Neurologist which was a much shorter wait. Many of my symptoms were neurologically based, such
as, headaches, dizziness, migraines, stupor, lack of balance, loss of consciousness, etc. The neurologist reviewed my MRI and conducted a number of
neurological tests and they all came back normal. He gave me some treatment
options for managing migraines and sat across the desk from me, shaking his
head almost remorsefully and said, “in reality, we really know very little about
the brain”.
Meanwhile, my health was deteriorating severely and six months after the
onset of my symptoms, I literally collapsed and was completely disabled by my
symptoms. Attending school facilitated this collapse due to poor air quality,
poor ventilation, chemical cleaning products and the personal care products
worn by students, staff and faculty. In addition to the neurological and
digestive symptoms, I was also experiencing musculoskeletal symptoms that left
me unable to move or get out of bed for days at a time. Test after test came
back normal and my family doctor turned to the “it is all in your head” theory.
She advised me that there was absolutely nothing was wrong with me and that I
was depressed and anxious. She prescribed me antidepressants (which I never
took) and counselling and shared a personal story about how she was depressed
last year and how SSRI medication really helped her. She went on and on about
how she practices evidence based medicine and that as her patient I should
trust her. She assured me that SSRIs were safe and widely used to manage
symptoms like mine and normalized the experience of mental illness noting that
most people become mentally ill at some point in their lives.
It was devastating. She invalidated me and my experiences and left me
feeling so powerless. I’d been extremely ill for months and my life was
literally shrinking as I spent most of my days and nights in bed, was unable to
attend class and had become isolated from community. I am not entirely
surprised that she thought I was depressed and anxious, but I knew that SSRI’s
were not going to resolve my symptoms. I have a degree in Psychology and I
worked in the field of mental health for 5 years. I am familiar with depression
and anxiety.
Unfortunately, I found myself in quite the bind because in the midst of
all of this I was also in graduate school and I required accommodations. The
Ontario Human Rights Commission points out the challenges that people with MCS
face in getting a diagnosis and that accommodations should be
provided with or without a diagnosis. Posters and emails
circulated the university about creating a scent-free space, but this was simply not enough.
Posters and emails do not make a space safe for people with MCS - far
from it. In order to qualify for services with the Accessible Learning
Center, I had to have medical documentation stating that I have a diagnosis of
a recognized disability. When I discussed this with my family doctor, she
stated that the only letter she would provide was that I have a mental health
diagnosis. At this point, I was in the thick of mid-terms and unable to
get out of bed, let alone go to class, so I was feeling pretty desperate.
I can still recall her patronizing voice, sitting across from me in that
medical office, saying, “do you agree to this letter or not?”
I feel like I was backed into a corner and left without any options.
I was going to lose my term if I didn’t get some support. I
couldn’t tolerate the ink in my textbooks, which meant I couldn’t do my
readings. I couldn’t be in my classrooms due to the “chemical soup” in the air.
I was uneasy on my feet, nauseous, foggy, unable to communicate, and vomiting
and crying in the bathrooms on the regular. It was taking me five or six
full days and nights to recover from being in the school one full day. I was
spending 20-25 hours a week soaking in epsom salt and baking soda baths
because it was the only thing that stopped the pain. I was so sick and I
simply couldn’t keep going to class. I organized a meeting with all of my professors
and explained what was going on and requested that I Skype into the remaining
classes for the term. The responses were very mixed. One of the professors
insisted that I needed medical documentation, while the other four were very
supportive and willing to assist me in any way they could. Ultimately, I Skyped
into my remaining lectures and conducted my presentations remotely. I wrote all
of my papers from bed.
By the end of the first term, I was quite ready to drop out of the
program because I was just so discouraged. I was spending the majority of my
time sending emails and trying to communicate my access needs, but it seemed
that no one was really listening to me. I barely even understood what was
happening to me - only that I was constantly assaulted by fragrance, chemicals,
cleaning products, dry erase markers, smoke from burning sage and poor air
quality at school. My immune system was in chaos and school was not a
safe place for me to be. Sometimes I could barely believe I was actually in a
Social Work school. The message was clear, I needed medical documentation. By that time, I had been on the waiting list
for the Environmental Health Clinic for approximately five or six months and
was told that it would likely be another year before I could get in. I
needed support, so I took my doctor’s letter and by taking her letter, I was
agreeing to the depression diagnosis. She held so much power over me with that
letter. I needed support and the only way to get it was to acquiesce to
her power. I had to admit that I was wrong and that she was right. Admit that I
knew nothing about my own body and my own experience and she knew everything. It was devastating for me, but I did it. I accepted her letter and in
doing so accepted her diagnosis. Self-preservation kicked in. I did what I had
to do.
I took all of the documentation to the Accessible Learning Centre and
finally someone was listening to me and took my concerns seriously. I was clear
with the Accessible Learning Centre that I was NOT depressed and explained to them
what was happening to me. The office had also never heard of my illness, but
they were willing to accommodate me and so I we moved forward with the planning
and ultimately came up with a plan that worked fairly well and had enough
flexibility in it that I could find success in my coursework, even if the
school itself remained unsafe.
Believe me, there have been many times in the last 19 months that I
thought maybe I was mentally ill because that is how I have been treated by so
many doctors, specialists, administrators, professors and even my friends and
family. If people tell you something enough, you begin to believe it.
What was happening to me seemed unbelievable even to MYSELF and were it
not happening to ME, I might not have believed it either!
I finally saw a specialist from the Environmental Health Clinic who
diagnosed me with Environmental Sensitivities/Multiple Chemical Sensitivities
(ES/MCS) at the end of September 2014. The doctor spent five hours with my
partner and I and was extremely thorough and described the complexity of my
multi-system illness in a way that was both accessible and validating. It
was the first time since I’d been sick that a doctor treated me with any amount
of compassion and understanding.
Mainstream medicine is reductionist. Everything has to lead back to a
single body system, with a test to confirm it and a medical intervention
(pharmaceuticals) to treat it. Environmental illnesses simply do not fit this
model of medicine because many systems are involved. New paradigms are
required and environmental medicine is necessary to be able to meet the health
needs of people living in our increasingly toxic world.
Having an ES/MCS diagnosis has been validating for me and has helped me
make sense of my experiences. I waited a long time to see a specialist. My next
step is to have the mental health diagnosis removed from my medical file. It
was never true in the first place and truly only represents the ignorance of my
family doctor. I only wish she’d had enough sense to just say, “I don’t know
what is happening to you” because saying “nothing is wrong with you, it is all
in your head” wasn't really helpful and actually did more harm than good.
