hi I’m Bethany I’m 18 years old I’m
studying for a degree in politics and
sociology and I have chronic pain
because I have an invisible illness
known as a non radiographic eggs ileal
spondyloarthritis really lucky I got
that one go so a non radiographic Xillia
spawned Alaska pee is a condition split
into three different sections so the
condition is non radiographic meaning it
doesn’t show up on scans generally a non
radiographic condition is one that
doesn’t show up on x-rays but mine
doesn’t show up on MRIs either meaning I
was undiagnosed for almost six years it
is an auxiliary condition meaning
meaning it affects your axial skeleton
which essentially is from here up but my
condition also affects my pelvis and my
legs and a spondyloarthritis is an
umbrella term for a group of
inflammatory arthrosis so what I
basically just said is I could have
saved you a lot of time by telling you I
have arthritis but where’s the fine that
so chronic pain more generally speaking
is officially died is officially defined
as any pain that lasts for three months
or longer but that is ridiculously
reductionist and overly simplistic
chronic pain is far more than just pain
it is disabling it is isolating it has
bad effects on your mental health as
many studies have shown that there is a
positive correlation between the amount
of chronic pain suffered the length of
the chronic pain and the severity of
depression suffered chronic pain impacts
your social life your work your school
your physical state obviously chronic
pain is more than just pain so the
chronic pain that I’m talking about
today is generally invisible there are
conditions where chronic pain is visible
but the vast majority are invisible
illnesses to define it a bit more
specifically an invisible illness is an
illness that can’t be seen to the naked
eye so I can walk on here and none of
you know that I’m disabled
hmm so when you have an invisible
illness you have to come out of the
medical closet because no one knows
you’re disabled there are millions of
ways to do it and everyone does it
differently but there are generally
three reactions that you get the first
is just a very awkward noise which
generally resembles a and then a sad
face and then you just both feel
uncomfortable it’s not that great but
more than just showing that the person
you’re telling is uncomfortable with
your specific illness it resembles the
fact that society in general is
uncomfortable with disability with
long-term illness when you tell somebody
you are well chronically you’re telling
them that you’re different to a lot of
people in society you’re telling them
that you’re not normal or not average
and oftentimes that’s kind of hard to
cope with the second reaction which you
often get when you are young or when you
have a joint problem is that you are
just too young to be ill and this is a
really annoying response but I’m gonna
say it’s allowed on one condition and
that is if you have a very personal
connection to the overlord of chronic
illness and disability and you can get
my condition reversed until I’m of a
more suitable age but everyone that’s
told me that I’m too young so far hasn’t
had such a connection to the land and
this again shows that when you have a
chronic illness when you have an
invisible illness it doesn’t fit into
what a disabled person should be I
should be 82 have arthritis but
unfortunately I’m not I’m 18 and
carrying on from that another very
similar reaction is that I don’t look
sick and I understand that often when
people tell me that it’s actually meant
as a compliment but all that’s telling
me is actually I shouldn’t be ill
because I don’t look ill because I don’t
fit into the very strict criteria of
what you should be to be disabled these
reflect
the stereotypes that are interwoven into
our social structures that did that
dictate the lives of those who are
disabled they tell you that unless you
are visibly ill of a certain age or look
a certain way then you’re allowed to be
disabled but if you’re not any of those
three you’re not disabled as I said
these stereotypes are held by millions
of people in society and it means that
you have to prove yourself whether it’s
having a massive badge that says I am
disabled whether it’s by maybe walking
with a more profound gait
whether it’s by having a walking stick
or a mobility aid or going to doctors
and saying please believe me that my
back pain is actually bad and I promise
it’s not growing pains whether it’s
telling friends when you can’t go out to
a social event that it’s because you’re
ill or you’re in pain and not because
you don’t like them or because you’re
lazy whatever it is you spend a long
time proving you’re ill because people
just won’t believe you I would love to
say that these stereotypes are only held
by people who have a very limited
experience of disability via a first or
second hand experience I can’t say that
when I was 16 I was about four years
into my chronic illness journey and I
went to see a Rheumatologist which is a
joint doctor I was at a period in my
life Rose undiagnosed I was very sick
and I was seeing a ridiculous amount of
doctors on a very regular basis because
to try and figure out what was wrong
with me so I sat down in front of this
doctor and I gave him my pre rehearse
spiel about I got sick when I was this
age and then my pain spread who and then
I tried this medication and and he asked
me the normal doctor questions and then
he kind of sat back and thought and that
is where the dangerous that came in he
told me that I had a pain processing
problem and I was after I heard that
euphoric like two seconds because I was
always said I was 16 and I was
undiagnosed I’d suffered from very
severe chronic
Payne for four years and suddenly let’s
fight that I was having against this
faceless illness was suddenly recognized
appreciated and had a name which made me
a bit stronger I had one up on this
entity that was fighting me I had a pain
processing problem so that I had to ask
him what a pain processing problem is
and in the words of this doctor a pain
processing problem is when you
experience the pain that everyone
experiences because you’re human and
everyone experiences pain so that kind
of made sense but a toxic mentality that
you hold means that you focus so much on
this pain it goes gets worse and worse
and worse because of the way you think
about it my pain was all in my head
according to the doctor that had met me
for five minutes and didn’t know
anything about the chronic pain I had or
how it affected me I would love to say
that the stereotypes held by that doctor
really only affected me I’ve taken the
burden for everyone else suffering from
the chronic illness and nobody else is
going to have to see a doctor who treats
them with that little respect or
recognition but I can’t say that and
that is why I’m here today to explain to
all of you what it is like to be ill
when you kind of shouldn’t be when
people think you shouldn’t be there are
very many ways to combat the stereotypes
and to fight the views that are held by
people that are frankly oppressive and
really change your life for much worse
one of the ways to fight these
stereotypes is to tell doctors where
they can shove their pain processing
problems doesn’t work that well a more
productive thing to do is to educate
yourself on what a chronic illness is
what chronic pain is and understanding
it’s a lot more than just pain and
understanding the stereotypes that
affect people every day and how deeply
interwoven they are into our society I
mentioned a bit about growing pains
when you’re young and have had chronic
pain doesn’t matter how long for doctors
generally will always ask you come back
in a month because it’s probably growing
pains it’s not growing things and these
are the type of things growing pains the
wonderful doctor I mentioned before
shows the things that we have to fight
against daily but with education and
with understanding even if it’s just
even if it’s just you it will start to
change the lives of other people because
suddenly this fight that they’re having
that they have to fight on their own
doesn’t become this lonesome battle
anymore if you can understand and start
to appreciate that if you’re not in a
wheelchair you can still be disabled but
if you’re not 80 years old you can still
have arthritis and that people of many
ages suffer many invisible illnesses you
are 10 steps closer to making millions
of lives easier education and
understanding will eradicate the
isolation that people with invisible
illnesses experience on an everyday
basis you can educate yourself by
watching talks like me thank you very
much by reading things online by talking
to people you know who suffer from
getting ditions like arthritis
fibromyalgia Crohn’s disease Perthes
disease etc if you start talking if you
start conversations the understanding
will spread and as I said that educates
isolation it means the invisibility
cloak that is forced on us when we
realize we are disabled when we
shouldn’t be that invisibility cloak
will be ripped off us the stitches of
these stereotypes will be snipped and
the fights that we have every single day
will become so much more visible and so
much more easy to fight because we will
no longer be fighting a one-man battle [Applause]