I am different from all of you why you
may ask because my body is redesigned in
order to survive not only do my body
look different it also function in a
different way than yours at least I
think so cuz how would I know if someone
else in this room was just like me
you wouldn’t tell me the shame would
have been eating up your words until
there was nothing left to say just
silence isolation have I confused you
enough yet maybe the time is right for
me to tell you what’s so special about
me but first I have to warn you because
word that is so dangerous that it keeps
people like me locked inside their homes
OOP there I said it
are you still okay I don’t poop like you
when I was a little girl I was diagnosed
with morbus Crohn’s disease it’s an
autoimmune disease that attacks my
intestines if you manage to medicate in
the right way you can have a somewhat
normal life if you manage to medicate
when I was 23 years old I have been
battling with this disease for the
majority of my life I just had my little
baby girl
Elle and I was so extremely sick that
there was no other way in order for me
to survive then she amputate my large
intestine completely it was just hours
away from rupture and if that would have
happened bacteria would have been
released in my abdomen and caused a
deadly infection so I got a stoma which
means that my small intestine was cut
and brought to the surface of the
abdomen and formed an opening a stoma a
special bag was placed over the stoma to
well that was not my childhood dream for
myself I was lucky blessed I would say
she’s been brought up in a home where I
learned about unconditional love I was
taught that my worth is not defined by
my actions my accomplishments my looks
or my ability I’m precious because I’m
Stila nothing more nothing less
and having a stoma does not change that
I’m still me so instead of shame my
operation gave me pride and the joy of
still being alive of course I wanted to
tell everyone about the life that I just
got back I was all happy and fuzzy on
the inside because I just went from the
darkest of nights to the brightest of
you imagine to have to eat at a
restaurant next to her it’s okay for me
if she has it as long as I don’t have to
see it well I equal and a stove back
with a diaper and I don’t see any
oh the lack of knowledge I receive
comments like this every time my face
appears in a magazine or a TV show you
would think that these comments make me
feel bad about myself but I feel bad for
them because I’m happy over my situation
I’m alive but if you feel the need to
put other people down in order for you
to feel better about yourself then
you’re a very very sad person and it’s
like you were forgotten all about what
you yourself are doing in the bathroom
at least once per day I promise you the
only thing that separates you from me is
the exit the lack of knowledge make
other people ignorant but what if there
was nothing to be ashamed of what if we
started to normalize normal things
I mean coop is pretty normal if you ask
me still we turn it into taboo same goes
for bladder problems scars deformation
overweight underweight depression
suicidal thoughts self-harm menstrual
problem loneliness and pretty much every
single disease there is because it hurts
to be different not being able to be
strong enough happy enough it hurts
because the people around you does not
want to hear and because of that you
don’t want to speak shame how I despise
that word there are about 1 million of
stoma operated people around the world
and shame is something we drag along
with us every single day up to 70% of
stoma patients experience negative
psychological distress when it comes to
their stoma I’m so curious what that
number would be if not the most common
shame is often confused with guilt but
guilt is something we feel when we did
something wrong
we want to make it mence and make things
right again
shame is different it attacks who we are
and the parts of us that we think will
be judged by others we don’t want to
it’s like my life has ended I’m too
afraid to even leave my apartment the
worst part of having a stove is that I’m
so embarrassed I don’t want anyone to
see me and I don’t want to tell anyone
because no one would understand today I
want to encourage you to talk talk about
what’s hard talk about your body issues
talk about your emotions and don’t let
any word or any circumstance be the
source to shame and isolation when I get
the question how it’s possible for me to
be so brave I always say it’s because of
two things one no stoma no steena
because of the stoma I’m able to live my
life be a mother wife daughter a sister
and a friend that brings me joy and the
courage to be brave too
I simply refuse to feel embarrassed
but my goal today is not only to
encourage you to talk but also to listen
get knowledge be enlightened and always
have a thirst in learning more about the
people around you have an open mind and
never forget that the person you least
expect may have a life-changing
experience to share with you for me the
hard part is not about the questions
that I get it’s about the questions that
I don’t get because they turn into
stares and pity and I don’t want any of
that once I got a comment from someone
who thought that me and my ostomy bag
should not be seen in public swimming
pool areas what did I do
I packed my bag and I went there the
same day for swim because I had to show
myself that no one can tell me what to
do and no one can tell me where to be
when I was in the shower this little
girl stopped and stared at me I smiled
at her and then she asked me what was
her mom was so embarrassed but I ensured
her that I didn’t mind her question at
all because it gave me the chance to
explain what would happened with a lack
of knowledge that turns into shame if we
my guess is that it would completely
disappear questions will be asked and
answered and the negative preconceptions
would dissolve bit by bit if we are free
from shame we would be healthier due to
a survey done at one of Sweden’s biggest
hospitals Karolinska Institutet only
four out of ten seek help when it comes
to depression and the main reason is
shame we would seek help in time without
shame the illusion of loneliness would
disappear and without shame every single
one of us would have the courage to live
the life that we deserve nothing should
be left in the darkness of shame when it
can be lightened up by the knowledge of
life thank you
[Applause] [Music]
may ask because my body is redesigned in
order to survive not only do my body
look different it also function in a
different way than yours at least I
think so cuz how would I know if someone
else in this room was just like me
you wouldn’t tell me the shame would
have been eating up your words until
there was nothing left to say just
silence isolation have I confused you
enough yet maybe the time is right for
me to tell you what’s so special about
me but first I have to warn you because
word that is so dangerous that it keeps
people like me locked inside their homes
OOP there I said it
are you still okay I don’t poop like you
when I was a little girl I was diagnosed
with morbus Crohn’s disease it’s an
autoimmune disease that attacks my
intestines if you manage to medicate in
the right way you can have a somewhat
normal life if you manage to medicate
when I was 23 years old I have been
battling with this disease for the
majority of my life I just had my little
baby girl
Elle and I was so extremely sick that
there was no other way in order for me
to survive then she amputate my large
intestine completely it was just hours
away from rupture and if that would have
happened bacteria would have been
released in my abdomen and caused a
deadly infection so I got a stoma which
means that my small intestine was cut
and brought to the surface of the
abdomen and formed an opening a stoma a
special bag was placed over the stoma to
well that was not my childhood dream for
myself I was lucky blessed I would say
she’s been brought up in a home where I
learned about unconditional love I was
taught that my worth is not defined by
my actions my accomplishments my looks
or my ability I’m precious because I’m
Stila nothing more nothing less
and having a stoma does not change that
I’m still me so instead of shame my
operation gave me pride and the joy of
still being alive of course I wanted to
tell everyone about the life that I just
got back I was all happy and fuzzy on
the inside because I just went from the
darkest of nights to the brightest of
you imagine to have to eat at a
restaurant next to her it’s okay for me
if she has it as long as I don’t have to
see it well I equal and a stove back
with a diaper and I don’t see any
oh the lack of knowledge I receive
comments like this every time my face
appears in a magazine or a TV show you
would think that these comments make me
feel bad about myself but I feel bad for
them because I’m happy over my situation
I’m alive but if you feel the need to
put other people down in order for you
to feel better about yourself then
you’re a very very sad person and it’s
like you were forgotten all about what
you yourself are doing in the bathroom
at least once per day I promise you the
only thing that separates you from me is
the exit the lack of knowledge make
other people ignorant but what if there
was nothing to be ashamed of what if we
started to normalize normal things
I mean coop is pretty normal if you ask
me still we turn it into taboo same goes
for bladder problems scars deformation
overweight underweight depression
suicidal thoughts self-harm menstrual
problem loneliness and pretty much every
single disease there is because it hurts
to be different not being able to be
strong enough happy enough it hurts
because the people around you does not
want to hear and because of that you
don’t want to speak shame how I despise
that word there are about 1 million of
stoma operated people around the world
and shame is something we drag along
with us every single day up to 70% of
stoma patients experience negative
psychological distress when it comes to
their stoma I’m so curious what that
number would be if not the most common
shame is often confused with guilt but
guilt is something we feel when we did
something wrong
we want to make it mence and make things
right again
shame is different it attacks who we are
and the parts of us that we think will
be judged by others we don’t want to
it’s like my life has ended I’m too
afraid to even leave my apartment the
worst part of having a stove is that I’m
so embarrassed I don’t want anyone to
see me and I don’t want to tell anyone
because no one would understand today I
want to encourage you to talk talk about
what’s hard talk about your body issues
talk about your emotions and don’t let
any word or any circumstance be the
source to shame and isolation when I get
the question how it’s possible for me to
be so brave I always say it’s because of
two things one no stoma no steena
because of the stoma I’m able to live my
life be a mother wife daughter a sister
and a friend that brings me joy and the
courage to be brave too
I simply refuse to feel embarrassed
but my goal today is not only to
encourage you to talk but also to listen
get knowledge be enlightened and always
have a thirst in learning more about the
people around you have an open mind and
never forget that the person you least
expect may have a life-changing
experience to share with you for me the
hard part is not about the questions
that I get it’s about the questions that
I don’t get because they turn into
stares and pity and I don’t want any of
that once I got a comment from someone
who thought that me and my ostomy bag
should not be seen in public swimming
pool areas what did I do
I packed my bag and I went there the
same day for swim because I had to show
myself that no one can tell me what to
do and no one can tell me where to be
when I was in the shower this little
girl stopped and stared at me I smiled
at her and then she asked me what was
her mom was so embarrassed but I ensured
her that I didn’t mind her question at
all because it gave me the chance to
explain what would happened with a lack
of knowledge that turns into shame if we
my guess is that it would completely
disappear questions will be asked and
answered and the negative preconceptions
would dissolve bit by bit if we are free
from shame we would be healthier due to
a survey done at one of Sweden’s biggest
hospitals Karolinska Institutet only
four out of ten seek help when it comes
to depression and the main reason is
shame we would seek help in time without
shame the illusion of loneliness would
disappear and without shame every single
one of us would have the courage to live
the life that we deserve nothing should
be left in the darkness of shame when it
can be lightened up by the knowledge of
life thank you
[Applause] [Music]
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