A Lull in the Storm: A TMAU Sufferer’s Personal Experience
Hello, everyone. Expressing my feelings was very therapeutic. I recommend it to anyone. I had meant to write about my mental suffering, but somehow I created a partly fictional, partly non-fictional story. The story is based on real events that occurred in my life. As for the ‘Fairy,‘ well, I’ll let you decide if she was real or not!
Being fifteen can be really hard: fighting with siblings, skin breaking out with spots, troubles with the boyfriend or run-ins with the parents. But none of that mattered to me, because I had to deal with something much worse. I was living with the most embarrassing, humiliating and debilitating medical condition: Trimethylaminuria, an odor disorder. It’s no exaggeration that every second of my life was torture. People could not stand being near me, some shunned me and others mocked me. I had to try and ignore looks of disgust and pretend I was ‘normal’ and happy.
“You smell so nice I could eat you!” Matt whispered in
my ear as we settled on my sofa, about to watch a film.
“Bliss, absolute bl…”
“Beep, beep, beep…” For a few seconds I thought
it was the beep of the microwave. But I found myself
staring at my reflection in the wardrobe mirror, sitting
upright and in a daze. I finally realised that the beep
came from my stupid alarm clock. Today ‘she’ made the
loudest noise ever. I guessed she was paying me back
for not being very gentle with her when I set her up!
“Thanks, Clock, for reminding me that Matt and his
kisses were only a dream!” I sneered, as I gave her a
rough tap to shut her up. “Never mind, it’s time to get
up and get ready for school.”
“Isabelle, hurry up you’re going to be late again!” Mum
shouted, as she always did before school. I woke up at
7:00 and it was already 8:20. I’m quite slow, but mostly
I pent a lot of time perfecting my personal hygiene. I
needed to be fresh and clean. I took time to ensure my
school uniform was immaculate. I put nail varnish on and
a little make-up. I also put on the latest expensive
French perfume I got for my birthday (yet another
perfume present!). I had to look well groomed at all
cost! My school bag was a little heavier than everyone
else’s because I had to take my deodorant, perfume,
baby wipes, a toothbrush and toothpaste.
“I can’t go to school, Mum. I don’t feel well. I must be
coming down with the flu.”
“Not in September!” Mum said.
“Well, hay fever then,” I pleaded.
“Not in September! Yesterday you said you sprained
your ankle, but you managed to run down the stairs
when I lied that Matt was at the door! It’s just excuses
after excuses and I’m tired of it. Move it!”
Mum was really getting frustrated with me. She
didn’t understand why I didn’t like going to school: I
excelled in all my subjects; I had a very good friend,
Emma…and I liked Matt–a lot!
Emma was my wonderful, beautiful and reliable
friend. We had known each other since Year 2 and had
become inseparable. She really didn’t mind sitting next
to me. I sometimes wondered why she was happy being
my friend. I didn’t know how she coped being around a
smelly girl but I was grateful to her all the same.
Matt was a neighbour and he was a year older than
me. He was always nice to me, but I knew in my heart
that he only liked me as a friend. Whereas I had a
massive crush on him for as long as I could remember.
How could he ever fancy me? How could anyone fancy
me?
I was quite friendly to anyone who was willing to be
with me. Quite a few people, including Matt, described
me as “very pretty.” Yet I had never had a boyfriend.
Every time a boy asked me out, it lasted a few dates
then ‘fizzled out’ for no apparent reason. Well, I always
knew the reason even if nobody ever dared tell me why.
So I made things much easier for myself: I declined
going on dates with guys! It wasn’t worth the hassle
anyway: I had to spend ages getting ready and once we
were at the cinema or fast food restaurant, I started
to sweat profusely because I worried too much about
my smell! Every second I wondered if he could smell my
odour… And the date always ended early: at the
restaurant we never had dessert because my date would
say, “I’m full up! Shall we go outside for some fresh
air?.” At the cinema we never see a film in full because
“it’s too boring”…
I had just started year 11, and even if the end was
a long way away, I was relieved it was my final year of
school. Mum didn’t know this, but after my GCSE exams
I had planned to work at a zoo, or maybe become a
landscape gardener, or even a lollipop lady…Any job
would do as long as it was outdoors and didn’t involve
being around mean people!
I had come across too many hurtful and unkind
people over the years. The worst ones were my
classmates. Most of them simply ignored me or avoided
me, but there was a clique of three girls who just
wouldn’t leave me be…I called them ‘the BOG (toilet)
gang’ (a little ironic for someone like me, I know, but it
suited them!), because everything that came out of
their mouths was utter garbage! I could also have called
them ‘GOB’ if I put their names in a different order,
because they have a nasty one on them! But it was BOG
for the time being…
Belinda was very tall and pretty- when her face
wasn’t distorted with disdain or anger.
Olivia was a little overweight but also pretty.
Gabrielle was always well-groomed and wore trendy
designer clothes, but she wasn’t very bright.
All three were very popular in school. They thought
they were loved because they were beautiful,
interesting and funny, but the truth was that it was
because they had rich parents! They often invited
students to their house parties, but, of course, I was
never a guest. My parents always encouraged me to
invite friends to the house, but I just couldn’t do it!
When my sister had her friends round, I usually made
myself scarce. She always brought me a tray of food
and drink to my bedroom when she had a party. Bless
her!
My younger sister Melissa didn’t mind being around
me. In fact, she looked up to me. How could she not
have noticed my smell? We were also comfortable
financially and I never wanted for anything. In fact, my
grandparents, parents, aunts and uncles often spoiled
me. They ‘showered’ me with beauty hampers full of
French perfumes, scented soaps, deodorants…and even
musical toothbrushes! I always thought, I get the
message, guys. Thanks for reminding me that I smell
and thanks for thinking I have a bad hygiene issue!
But Mum and all my family members swore blind
that I smelled ‘normal’ or ‘good’…
Mum loved lighting incense around the house. I once
asked her if she did it because of my unpleasant odour.
She assured me that “everybody uses air fresheners or
incense in their home. It’s because of the food and
toilet smells…and your dad’s smelly feet, of course.”
No matter how down I felt, Mum always managed to
make me feel better. However, one day I got home two
hours later than usual as I had to do some ‘emergency
babysitting for my aunt. Mum, dad and Melissa were
watching “Emmerdale” on TV. I straightaway noticed
that the usual ‘White Musk’ perfume scent was
imperceptible. I went upstairs for a quick wash and
change of clothes. Twenty minutes later I entered the
living room, and an aroma of White Musk filled my
nostrils…This happened a few times, enough to warn me
that my family knew I smelled bad, and they tried to
mask my horrible odour.
***
The first time I had a run-in with the ‘BOG gang’
(Belinda, Olivia and Gabrielle), I was sitting in the
canteen with Emma and three other friends. We were
in Year 7, and life was so good then. I was carefree and
always up for a laugh because I was ‘normal’ then: I
didn’t have any body odour issues. ‘BOG’ sat next to us.
I noticed that they were fidgety, looking under the
table, behind them, while grimacing. Emma and I were
wondering what their problem was, until Olivia said,
“Someone stepped on some do-do, it stinks in here!”
Belinda confirmed, ”Yeah, or maybe they’ve come
from the toilets and left a skid mark!”
There was an eruption of laughter at our table. My
friends managed to muffle their laugh. Even I felt like
laughing, but I was puzzled because I couldn’t smell
anything. Then I felt all eyes on me. The ‘BOG gang’
stood up and went to sit three tables away from us.
When I asked Emma what she thought of what had just
happened, she brushed it off saying, ”Pfff, these girls
are drama queens, they just like attention.”
After that day, there were quite a few occasions
when the ‘BOG gang’ made comments about bad smells
in the classroom or the gym, and each time, I thought,
they’re just weird! I did feel puzzled as to why they
hardly ever spoke to me or avoided being around me,
though. Emma had reassured me that they were jealous
of me because Matt was my friend. Belinda liked him a
lot, and when she had asked him out on a date, she was
rebuffed in no uncertain terms! Good old Emma, always
trying and succeeding in making me feel better- until
that dreadful, humiliating day…
That day, as I entered the classroom, I heard
Gabriella say, “You know when we sing ‘jingle bells, the
teacher smells about Mr. Rick?” (Mr. Rick is our
Geography teacher. He is a very interesting teacher
who looks a little unkempt at times. Thankfully for him
his name’s not spelled ‘Reek’!). “Maybe we could change
it to ‘jingle bell, Isabelle you smell!” A roar of laughter
ensued. Emma had her head in her book, pretending not
to have heard Gabrielle.
I froze with embarrassment. I knew everyone saw
how red my cheeks had become. All I managed to do was
focus on one thing: DON’T CRY, DON’T CRY! Now I
knew that the ‘BOG gang’ had actually been referring to
me when they’d asked “who’s farted?” or “someone
needs to go to the loo again” or “there’s a dead mouse in
here, or what?” Why did they feel the need to humiliate
me in front of everyone? I had always tried to be nice
to them.
***
Years 8, 9 and 10 were pretty much the same. The
‘BOG gang’ had continued to bully me about my smell.
They would do their best to come up with ‘new material,’
such as: “imagine if a boy tried to kiss her? Yuk, she’d
make anyone want to vomit!” or “How can anyone,
especially a young woman, not wash properly?” Every
time they would come near me, they sprayed some
perfume. They often put tissue in their nostrils and on
one occasion, they went as far as blocking their noses
with washing pegs…
One day, they were pretending to have a fight by the
window. One tried to close it, complaining that it was
freezing. The other insisted on opening it, stating, “But,
it’s going to stink in a minute!!”The third one offered to
spray some expensive perfume, if they closed the
window. And each time a remark was made about my bad
smell, most people in the room laughed and the ‘BOG’
gang cackled…
Another time, I had just got in class after break
time. It was a double English lesson so we already had
our designated seats. I approached my table, pulled my
chair and jumped back when I saw some liquid on it. I
couldn’t believe they had gone as far as putting wee on
my chair. They’re really taking it to the extreme, I
thought, battling tears.
I asked myself, What should I do? I tried to compose
myself quickly, repeating to myself, “Don’t let the bullies
win.” I took out tissues and wipes from my bag,
preparing to gag. But to my surprise, a lovely aroma was
reaching my nostrils. When I wiped my chair, I
recognized the scent of ‘Sweet Miss’ by Jerome. It was
actually one of many perfumes given to me by my family.
So, there was some relief that I didn’t have to wipe
wee, but the message the ‘Bog gang’ meant to convey
was very upsetting: you stink!
My locker was often broken into and I would find
some chewing gum, deodorants, toothpaste or wipes.
These were the nicer “presents.” But sometimes I would
shudder at the sight of dead flies. One day, I even
found a cockroach…
Life in school for me was stressful. Every single
lesson was a challenge for me. I managed to relax a bit
during Physical Education and Lunch breaks-if I could
eat outside. I always tried to avoid going to assemblies
because the whole school was attending and it made me
feel claustrophobic. So after registration I followed my
usual routine of hiding in the toilets (or sometimes I hid
under the teacher’s desk). While all the pupils had to
listen to boring speeches, I used the time to check on
my appearance, wipe my armpits, add more deodorant
and perfume. One day I got startled when I heard a
high-pitched voice on the tannoy.
It was Mrs Cussit. She requested that I go to the
assembly hall as a matter of urgency. I froze. “I cannot
go!” I panicked. She made the announcement twice more
but I didn’t budge. Later, during afternoon registration,
my tutor asked me why I didn’t attend assembly. I lied
that, as I was on my way there, I suffered a terrible
nosebleed. It turned out that I was wanted there to
receive a certificate of excellence for my Science
project.
Never mind, at least I didn’t have to walk past all the
students staring at me in disgust and commenting on my
stench…
I loved learning in school but I was always stressing
over my odour. I liked summer better because I could
eat outside (well, as often as possible with the British
weather!) and nobody complained about being cold if we
opened windows. In winter people didn’t like to open
windows because of the cold, so I got dirty looks. No,
life in school was not much fun.
Emma had sworn to me that she couldn’t smell
anything bad on me. I was too embarrassed to ask Mark.
I didn’t have any other friend to ask. Over the ensuing
years, the three other friends I had spoke less and less
to me. I was made to believe that it was part of growing
up: people change therefore friendships change. I knew
that the BOG gang’s bullying campaign was wrong, but I
couldn’t bring myself to tell the head teacher or my
form tutor because I was too embarrassed. I had two
wonderful friends, yet I felt alone, helpless and
misunderstood. Despite trying, I struggled to make new
friends and I finally knew why.
My parents and my sister also swore that I didn’t
smell bad. But on my insistence, they agreed to come
with me to see our GP, Dr. O’Megawd. She tried to be
sympathetic because she could see how distressed I
was, but like my parents she claimed that she couldn’t
smell anything bad on me! I was given a leaflet on
‘Personal Hygiene’ and was advised to visit my dentist
(even though I saw him twice a year and had an
impeccable oral hygiene). The dentist couldn’t find
anything wrong with my mouth. Then I was sent to the
Ear, Nose and Throat clinic. I had a Barium meal, an
endoscopy, and a colonoscopy but all the tests came
back clear.
Finally, I was sent to a specialist clinic to see Nurse
Dee Kay. Apparently I needed education on how to
empty my bowels correctly. She taught me how to
elevate my feet on a stool (no pun untended!) when I
need to do anumber two. Nurse Kay had left the room
and when she came back, she gave me a small spray
containing just water and lemon. She told me I could
spray it discretely whenever I felt uncomfortable about
smelling bad. I put it on the table in front of me, and we
carried on talking.
About five minutes later, she suddenly froze in mid-
sentence and said, “Oh, I forgot to show you how good
the scent of this little spray is!” And she proceeded to
spray it towards me.
I was a little taken aback, so I gestured to take the
spray from her and said, “Oh, it’s fine, I know what
it smells like.”
But she quickly moved her arm away, sprayed a few
more times in my direction, saying, “Look, you can also
spray it under your desk like that.”
I suddenly realised that a bad smell had emitted
from my body, so she was desperately trying to mask it
by spraying the perfume! If having this disorder wasn’t
so traumatic for me, I’d have found this quite funny!
I was given various types of medication such as
laxatives and antacids, but nothing worked. After
nearly a year of clinical investigations, the taunts at
school had continued but medically I was apparently
very healthy! So on another visit, Dr O’Megawd told my
parents that she suspected I was suffering from
olfactory reference syndrome (ORS) and needed to see
a psychologist. In a nutshell, she thought I had a mental
disorder: a false belief that I emitted abnormal body
odours that are foul and offensive to others. According
to her, all I needed was Cognitive Behavioural Therapy
(CBT)…
I had two sessions with my CBT consultant. During my
first visit he complained about being hot and opened the
window. It was January… And at my second visit I came
in to find the window already open and there was a
pleasant fruity smell. I later caught sight of a plug-in
freshener! I had decided there and then that it would
be my last visit. I knew all along that it was not in my
head anyway. The ‘BOG gang’ was not the only ones who
had made me realise that I stank.
Once, my family and I went to a family gathering
(despite ‘having’ the flu, hay fever, runny tummy and
terrible migraine, mum still insisted that I go. She
obviously knew I was lying to try and stay at home!).
There was a little boy who was standing nearby and who
kept staring at me. He disappeared for a few minutes
and came back with a bag in his hand. He took out a
piece of chewing gum and handed it to me. I smiled at
him and said, “You’re so sweet! Well done for sharing!”
But he looked me straight in the eyes and said, “You
don’t smell nice, you’re going to die soon”… My heart
sank into my stomach. There was nothing that could
come out of my mouth. I spent the rest of the day
hiding in the garden shed.
I was so grateful that Mum could give me a lift in
the mornings, but I had to take the bus after school. I
dreaded it so much that I was willing to wait half an
hour to avoid fellow students. I was lucky enough that
the ‘BOG gang’ went home in their parents’ Mercedes
or Range Rovers, but it was still a terrifying prospect.
***
One day, I got on a bus and sat by the window. A man
sat next to me. Not long after he stood up and went to
the rear of the bus, another man took his place and the
same thing happened again! Then a woman sat down next
to me; she quickly stood up and opened the window. She
stood still for a few seconds and walked towards the
back of the bus. I realised that even though the bus
was packed towards the end of my journey, nobody had
taken a seat next to me…
When I got to my destination I could finally breathe
a sigh of relief and get home to a place where no one
would look at me in disgust or make a snide remark at
my expense.
Another time, I was sitting at the back of the bus
and a group of girls sat around me. They were happily
chatting away about some stuff or other. Suddenly,
someone shouted, “URRG! Who’s farted?’’
One girl pointed at me and shouted, “It’s her!” Then
she called out to a friend who was sitting near the front
of the bus and asked her to swap seats because they
needed to ask her something. Then they were all
shouting at once, “No, swap with me!” Every
one was laughing except me…
Click here for the end of the story in part 2.
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