Wednesday, 19 March 2014

Day 54, Being a Teen with Endo

Endo 365

Let's face it, growing up isn't easy for anyone. We are constantly growing in awareness and trying to make sense of the world in to which we are emerging. We learn that the world is not all sandpits and nap time, it is tough and at times frustrating and the greatest injustices are those we experience for we know no greater burdens than the ones we carry on our own back.

This blog is dedicated to the younger Alice and to many more like me. I will explain to you what it is like being a teenager with endometriosis. In the words of  MJ 'you are not alone' 

Incase you didn't know, I am 18 years old and have been suffering with endometriosis for six years now.  It has been challenging, isolating, debilitating and at times, heart breaking. However time really is the best healer and you learn to live with it, because well, that is all you can do. You may as well make the most of it, right?

My initial reaction to diagnosis was crying with happiness. We finally knew what was wrong and now we can fix it. However when I began to read blogs and horror stories online a dark realisation soon overcast my previously optimistic hopes. Reading about women who wanted to kill themselves because they were in so much pain every day and their husbands had left them because they couldn't have children is never nice, especially when the thing at the epicentre of her troubles is something you have in common: endometriosis.

Young, impressionable, ill informed and increasingly isolated, this was a very very scary prospect and something near impossible to digest. It quickly seemed that endometriosis was a nasty, malicious, potentially life devastating sentence. And indeed it can  be those things and many more, but that is not why I am writing.

The more I read the more it was being nicknamed 'The Working Woman's Syndrome'a punishment for women who had chosen careers over child bearing and thus were struck down with this for not using their uterus for what God intended.' Ignorance is the greatest provoker isn't it? How about this you particle supporting baboons, maybe they ended up with careers because they couldn't have children, over 50% of women have their first experience of endo before they are 25. But what do I know.

Anyway, rant over, apologies.

As I was saying, having this crippling condition from a young age when society believes it to be only for older women is incredibly isolating for many reasons: I thought I was an outlier (not for the first time) but I now know I am not. The more involved I become with Endometriosis UK the more lovely ladies I meet with this condition who were my age and younger. Never feel alone because it is quite simply a fallacy. There are 1.5 million alone of us in the UK. Secondly, I was so isolated because so few people knew it even existed. That is true for some people, but it is changing. We can make a change. Everyone on my social media and in my real life knows exactly what it is, and my friends friends do too. You have help this movement, be a cog to our clock.

With time comes perspective of these things, you feel alone at the time but when you make it to the other side believe that you wont. Come to the Endometriosis UK event and make friends, attend or host a support group, scream 'Endometriosis' from your Town Hall! You see where I am going with this. If you are reading this it means you are fairly techno-literate. There is a huge endo community on twitter and Facebook and even Instagram! Email me, I will always reply. It is:

One of the things that takes years to understand and then perfect is pain management. First, you must learn your body which is part of your adolescence anyway, you just get a crash course. When you feel great amounts of pain from a young age it is quite a hard thing to contextualise: it is scary because it isn't normal to take ambulances from school instead of the bus. You fine tune instincts before you peers about how your body feels, what it needs and wants. You know when your kidneys aren't working properly because you have poisoned them with the painkillers you take to ensure you can manage going to school. From a younger age you are far more intuitive about your body as a machine than your peers. It's an unfair thing, but it isn't a bad thing. If this interests you, read my blog on 'Pain Management.'

Knowing your body has it's advantages, I now know within two minutes whether it is the sort of pain that will escalate into needing morphine, so I can act appropriately before ending up in A&E. I can identify and counteract what and why parts of my body ache and have the knowledge of how to sort it. Meanwhile my peers are still confused and (rightly) complaining. We  soon know what is wrong and we know how to sort it. That is a gift in life. 

Naturally I am a busy bee. I love balancing 7 plates whilst running a marathon. I thrive whilst multi tasking. However between the pain and the medication, I ended up with chronic fatigue from the age of 14 to 17. For those of you unaware of what it is like, I want to say you feel like a zombie. No energy, no life and lots of grunting. You can do things to help it, but what is hard to explain is that irregardless of whether you have 12 hours sleep a night, you will still fall asleep in maths. And physics. And deffenatley French. Sometimes you have to cancel last minute on social engagements because you're whipped out. And that is hard for people to understand because to them, you are a teenager and thus in your prime years. You should be able to do all things and with enthusiasm!

It got to the stage for me where I stopped everything that wasn't school. I slept and did work and quite often at lunchtime I would go to the medical room and have a nap. You have to make choices about what is important and neccicary to your life, then let the rest go. I know this is unfair, but if this is the position you are in, accept it. Learn your body and start a regime that works to your benefit.

Being diagnosed with dyslexia at the age of 6, I have always had to fight and work harder to fulfil my academic potential. Because of this I was never the typical child hating school; Instead I actually valued it. I believe that education is a fundamental right as a human being, the best tool to be equipped with and A legacy to install in your children. However I also believe in this world it is a privilege because not everyone is born into a society like ours, where as a female you would be able to write a blog, and indeed read a blog. We are so lucky that irrigardless of sex or wealth, we have access to a free, safe and comprehensive education.

Because of this I chose to focus on my schooling and sat my GCSE's with just over a years attendance across the two. Likewise I missed a lot in my AS year at A level. But thankfully I had selfless and devoted teachers who would sit with me in their lunch hour and the like to catch me up. It is good having goals when you are going through hell- pick them and work hard for them, that way you forget you are walking on hot coals to get there. And you know what, irregardless of my dyslexia and attendance- I still did okay. Mores the point, I didn't let any ailment win. It doesn't matter whether they were straight A*'s or straight d's because I succeeded where many would have taken the easy route and dropped. It it matters to you, work for it. If it upsets you, smile at it. If it scares and intimidates you, run at it. 

Obviously not everyone has to be as extreme as miss competitive here when managing school work and endo. You have to calculate how much you are willing to sacrifice for school, what it is worth to you. A good way to catch up is getting your friends to co-teach you. It is good for their revision to go over it with you, it is social, and you're also learning. Do not leave everything to the last minute or you will feel like you are drowning. Try and do half an hour everyday.

During my time I learnt the best way for my body to combat the fatigue was regular exercise, sleep (obviously), the FODMAPs diet and most importantly: positive thinking. It is very easy to feel down when you're inside, horizontal on the sofa like yesterday, and the day before. But use it as productive down time, become a film critique, read books, write hoax answers on yahoo answers!

The next one is so unfair at the time, but ultimately is such a blessing. When you have real issues to worry about, when you are carrying real burdens and fighting real battles, the typical  indulgent teenage worries are irrelevant to you. And it feels unfair that you have to worry about whether you will ever have children whilst your best friend is worrying about what colour to dye their hair. But that is just the way it is. Accepting it will be the biggest weight off your shoulders.

First you must of course mourn for the injustice of it, scream into your mothers chest whilst she holds you, cry yourself to sleep and hold your friends hand when you have just had enough. It sucks, we haven't done anything to warrant this but then nor have the babies who were born HIV positive. Endometriosis is isolating. Especially when you are young and it is embarrassing, and you're not sure who you are let alone how you deal with this. But I will let you into a secret, of all the friends that seek my council, all of them feel alone in some aspect. I guess ironically we are all together in feeling isolated and that no one can understand. How very teenage and western of our little indulgent selves. 

Plus, we are spoilt growing up in England because we experience a false sense of absolute justice and there is nothing your parents cannot right. But in the real world unfortunately it isn't just and it isn't fair. No matter how much my daddy loves me it will not take away my endo. It is a fact of life. 

Trust me, in the end, having that perspective allows you to contextualise what is a real issue and what is worthy of worry, whilst being able letting the more futile things wash over you because you know the bigger picture. If you like, we have seen the light  from Plato's cave meanwhile our peers still stare at shadows.

Because of Endo, treatment and the fatigue, I have missed out on many 'typical' teenage experiences. I was robbed of my right to petty, futile and magnificently normal every day problems. I was robbed of my right to go to school and have the social life I naturally crave and have now, I was robbed of the innocence and ignorance teenage years warrant. I grew up too quickly. Having old woman hormones I would never have that crushing first teenage love because the hormones just weren't there- and I'm naturally hostile enough towards potential male suitors as it is !

It is hard, but there is always a way to manage because that's what we have to do. We have to cope because running away will not change the fundamental facts- as soon as you accent this, you have nothing to lose by empowering yourself to work hard, be positive and make the best of the situation.

It is no picknick. It is nothing we would choose to do. It is so impossibly lonely. But You are bigger than your problems, I promise. And you are not alone, things could be worse, and in the end, they will be okay as well.

Hope, think positively, and think globally

All my love,

Alice XXX

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