Just as disclaimer, I'm gonna be talking about periods, uteruses and vaginas in this video,
so if you feel uncomfortable about that, well I mean I don't really care
but you might want to click out of this video.
[cute xylophone theme plays]
[Don't You by Simple Minds plays]
[Hey hey hey hey!]
[clicks fingers] Don't you, forget about me!
Bow! [sings in time to the song]
Bow!
Hi...
I'm Victoria...And I have endometrio - [fake cry/groan, chipmunk voice altering]
Hi, I'm Victoria and I have endometriosis.
[sounds out the word]
[BIG EXHALE]...Talking about this subject is harder than I thought it was gonna be...
I wrote down a bunch of things that I was going to say... And, just sitting here,
I'm finding it really hard to actually say them out loud.
I think it's because I've never actually said them out loud [in] this public way.
I'm not here to talk about the medical science of endometriosis,
though I have linked a number of good resources down below, in the description, so please check them out.
I'm here to talk about what endometriosis means to me.
[clicks tongue] Before we begin, we should probably just look at the definition and get some context right? Oop. [noisy earring]
So endometriosis is this:
It's just to me in the background, waiting for you to read it, have you read it yet? Okay.
The severity of the endometriosis itself doesn't necessarily relate back to the severity of the symptoms.
For example, a woman that has mild endometriosis might have very severe symptoms,
and a woman that has severe endometriosis might have very little symptoms.
The tricky part about this illness is that it's relative to every individual and
tends to be misdiagnosed, because the symptoms are also common in other illnesses.
Basically, endometriosis is completely complicated and everyone including myself finds it hard to understand.
So, if you're sitting there like, [clap] "what the heck is she talking about?" [clap] I don't even know what I'm talking about. This disease is...
This is the opportune moment to open up and talk about this invisible illness, that has seriously pervaded and seeped through every area of my life.
Endometriosis to me means [sad ambient music fades in]: pain is my closest companion and my worst enemy.
It's always there, even when I don't want it to be, it never leaves my side.
It means when I was younger, I was afraid to learn about my condition, because I felt like I was in a horror movie.
I'm like that main character that needs to find out what's going on and the answer is in the basement,
but you don't want to go down to the basement because it's scary and dark.
[SIGH] And I've only recently gotten myself out of this mentality,
[stumbles on words] to not be scared of my uterus and vagina like it was cursed and demonic; even though it is.
The only way around all of this is to do the scary thing,
[AKA] confronting all the years this condition is taken from me and all the pain that's been built up over the years.
Endometriosis to me means: periods are literally the worst.
I have known what it's like to bleed heavily every day for months on end without breaks.
No exaggeration, because it actually means my body is attacking itself, it's attacking me from the inside.
Endometriosis to me means: ableism is always close beside me.
It means experiencing sexism and discrimination from both [cis] men and [cis] women, because of my illness, even women who have endometriosis...
It means... feeling completely shattered and wounded from jokes about women on that period.
Endometriosis to me means: sometimes fearing my period more than I fear dying.
It means being bedridden for months without breaks.
It means feeling like every time I take a step forward I have to take three steps back.
[It] means feeling like I'm speaking a foreign language and I've come from a different planet,
because I feel like no one understands me.
Endometriosis means: having more bad health days than good health days.
It means empathising with elderly people, even though I'm 21 and in the 'prime of life.'
It means missing out on a lot of opportunities... missing out on half of a year of school in year 12; almost had to drop out.
I've had to take months off or years off, in between studying, because of my illness.
It means feeling like I can't get anything done, because everything hurts.
Endometriosis means... to me: that I fear being in a relationship, because of all the baggage I will have to bring with me.
It means I have a nagging fear at the back of my head, that I may not be able to have a baby if I want to.
It means, I can forecast the weather like a pro, because my body reacts to the changes, in both good and bad ways.
AKA Rain and humidity: they are no friends of mine.
It means, the thought of stairs, makes me wince...
Even thinking about it now, [sharp inhale and whispers] stairs, I hate stairs.
Endometriosis to me means: that I am constantly conflicted about using a wheelchair,
because sometimes the pain is so bad and I want to get things done, but I also don't want unwanted attention.
Endometriosis to me means: when I was younger I rejected and despised femininity, because female organs
and the functioning of them - my uterus, my vagina - are seen as unclean, unsanitary, shameful and disgusting by others.
It means being told that it's normal for my periods to hurt me and make me suffer.
[chipmunk voice alter] "Get over it, it's just your period. Every woman experiences this!"
It means, feeling like I have to lie to people, especially men, about the truth of what's actually happening to me,
so they don't feel uncomfortable because my uterus and bleeding is the cause of my intense pain.
It means craving the approval of others and pushing myself past my limits, so I could appear to be normal.
It means [SIGH] having the erasure and disbelief from others about my illness, because of my gender and age: being "too young for it."
It means hating my body and finding it impossible to be body-positive, and 'love myself.'
It means saying goodbye to the dreams I had before I hit puberty... and endometriosis entered my life.
It means having to give up a lot of things I love: like food, passions, friendships.
It means feeling like a prisoner trapped in a body from hell.
It means having to still go about my day, with pain that feels like I'm being constantly stabbed, or my stomach is on fire.
It means putting my body through all kinds of [treatments] to manage my illness -
a lot of which don't work or only have temporary relief.
It means everyone telling me to go on the pill, get pregnant, get a hysterectomy, because that'll cure it right?
It means wasting a lot of time in doctors offices, surgery and treatments,
only to be told they can't see anything, there's nothing wrong with me, I must be wrong, it's all in my head...
It means minimising my own illness, because I'm starting to believe it is all in my head.
It means getting confused by all the symptoms I have,
because nobody told me that there are no regular endo symptoms.
It means having chronic pain, chronic fatigue, migraines [sped up voice] nausea, dizziness, vertigo, fevers,
light-headedness, distorted and blurry vision, shaky hands, photophobia (severe light sensitivity),
naturally low immune system, whole body aches, brain fog, feeling like I've run a marathon every day/hitten by a bus/or severely injured/beaten up,
not being physically stable enough to walk or stand at times, not being able to read/focus or see things properly some days, not being able to sleep,
experiencing depression and anxiety, symptoms of agoraphobia...And more if I'm lucky!
It means not knowing my pain limit and being unsure of how much pain I have to have to dial 000 or go to the E.R.
Endometriosis to me means: people seeing my sick self as my 'self' and the frustration of no one seeing me.
Endometriosis means losing myself and finding myself again through my faith in Jesus Christ.
Endometriosis means finding relationships and forming bonds with women like myself because of my illness.
Endometriosis means to me: not taking for granted the energy I might have in a day.
It means appreciating my health.
It means appreciating all the people around me and all of the things that I'm blessed with.
Endometriosis to me means I will never again [never say never scrolls past] take for granted the ability to run, swim... live.
Endometriosis to me means...I'm not my illness.
It is a part of me, it is a part of who I am, but it doesn't define me.
To quote the beautiful Susan Sarandon:
And also as Gabriel Jackson said:
So, what does endometriosis mean to you?
Did you know what endometriosis was before this video?
Let's start a conversation!
Leave your comments in the comment section below.
Or you can tweet me, facebook me...I'd love to hear from you.
And, if what I said resonated with you and... you suspect you might have endometriosis,
Please seek help straight away.
As frustrating as it can be, there is help out there.
I'm not gonna say it's easy.
You're the only one who knows how you're feeling, if your doctor/the person you're seeing doesn't believe you, isn't making you feel heard,
seek a second opinion, because that is your right.
You have the right to answers and to better treatment.
Until next time friendlings!
[sings] This is theee end of the video, where youu subscribe and like and share this! If you like this, please subscriiiibe, please subscriiiiibe!
[chipmunk version of Don't You by Simple Minds plays]
[chipmunk voice] Rain keeps falling, rain keeps falling down Down DOWN. [giggles]
Rain keeps falling, rain keeps falling down Down DOWN.
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