A TMAU Sufferer’s Story

roses_flowers_two_red_heart_love_22706_300x188

A Lull in the Storm 

4 logo_1685361_webHello, 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.