She Used to be Mine
By Dannielle Stewart
She is funny, because there is no other way, in her opinion, to face each day. She is shy, introversion has always been her default and she is perfectly comfortable to be lost in the world on the page rather than the world around her. She dreams big, ambitious dreams, years too soon, always planning what will be when she tires of what is now, imagining that one day her life will be a certain way - just the way she likes it. She is kind and a loyal friend, but stand between her and the chance of a top grade and you'd be better off dead. There is an unrelenting fire inside that pushes her to do more, be better, and not accept good enough from herself, sometimes too much. She is all of these things and more, she is young and probably pretty naive, but that's okay because there is still time to learn all of the things that make us older and wiser.
She is gone, but she used to be mine.
I was fifteen years old when I started to feel the pain that I have come to recognise as my endometriosis pain, just beginning to figure out who the hell I was and wanted to be. I know that endo changed me, before I even knew I had it, because it was inevitable - it was always going to be that way. When my first thought about my pain was that it was normal, and not something I needed to worry about, it was inevitable that the experience would change me as a person. When I couldn't cope with the pain, I blamed myself, told myself to be stronger, to suck it up. Doing that burdened parts of my mind that I hadn't dealt with before. As I got older and I began to question the pain more, I started to listen to other people who told me it wasn't as normal as I had convinced myself it was. Questioning became worry, and worry lead me to my specialist for the first time. Then I spent another year and a half, battling with myself, about whether I had endo or if it was just me as I had always thought.
Who at fifteen years old is equipped to deal with the burden of a crippling pain of unknown origins, hoping that it's just your period, but deep down worrying that it is something more? After "she" got involved, and I began to deal with my pain and confusion in maladaptive ways, I knew it was time to grow up. The real world awaited, because I had just been thrust into it, big time. Of course I clung to the safety of fifteen and sixteen, a place where one was expected to think about growing up and the future, but it was more than permissible to be lost in the present, being a stereotype of the typical teenage archetype. I lost track of the amount of times I told myself, "it's just period pain, suck it up". There would be times where I was not convinced of this fact at all, where the pain became consuming and I thought - this isn't the way it's supposed to be. Just as quickly the pain was gone, and I would forget how awful it was, thus assuring myself it was okay. Other people seemed to agree - other girls in my class said they had pain too, I should just wait until sixteen came around, then I could go on the pill and everything would be better. When going on the pill didn't make things that much better, I again assumed it was my coping skills that needed work. This is the way it was, until I had my first surgery and Graham Tronc told me once and for all, this is not in your head, this is not just period pain, this is endometriosis.
After I was diagnosed I began to think about fifteen year old me.
I still think about her now, what she would have become if she didn't have endo, if she would have been almost the same, or fundamentally different. I like to think I still have her sense of humour, her loyalty to friends, and maybe even a bit of her "give me perfection or give me death" approach to academia. I have rediscovered her ambition, and I still plan things to take a break from reality, just like she did, but I am much happier in the present than she was. Sometimes I wish I could re-write parts of her story, to take away the pain she felt and the sadness it brought. When I think about this, I am reminded of a surprisingly sage quote from my boss after my first patient death. He said to me, "part of me wishes I could take this feeling from you, so you wouldn't have to feel the angst, but another part of me doesn't want to because I want you to learn from it". Endo changed me, but I can't say it never gave me anything I could use either.
It's normal to grieve for the person or the life you had before endometriosis, especially if your endo journey has taken a lot of what you once had. Endo brings so many challenges - pain, fatigue, sickness, infertility, social isolation; but it can bring other things too. Take a moment to think of some of the things that endo has given you. They may not be obvious at first, but I'm sure amongst all the disappointments (and there are so many, I know), there are parts of you that are the way they are because of endo, for the better. When I see women with endo, I see strength, because how else would we have survived all of this? I see women who are strong enough not only to do battle with their illness every day, but to help others deal with theirs through education and awareness. I see women smart enough to cope with multidisciplinary issues, to keep track of multiple medications, appointments and treatments, all while dealing with exhaustion and fatigue. I see women who are tenacious enough to keep trying, even when they face barriers, to seek another opinion, try another treatment, or speak up when they were told to be quiet. By all means, take the time to grieve the woman that you used to be if you feel that she was lost along the way. Give her the respect she deserves, leave her in the life that was before, honour her. But do not forget to celebrate the woman that you became, because there are so many great things about her too, you just have to see it. I see it.
Endometriosis may have brought me pain I didn't realise existed, confusion, loneliness, and, at times, the questioning of my sanity, but when I look within myself and the people around me, I see how much it gave me. It gave me a voice with which to advocate, to educate and to help, where before I was quiet and believed what I was told. It gave me strength, when I was sure that I had none, because I had no other choice; I realised all of the things I was capable of doing despite horrific pain. It gave me a purpose, where before I had a drive to care, and to help, the same drive that lead me to become a nurse; but now I have focus, I see clearly the people whom I want to make things better for, my endo sisters. Most importantly, endo gave me a second family, full of exceptional women who look to the skies with the same hopeful and determined ambition as me, where before I was satisfied with my own company and the conversation in my mind. The most important thing to learn from your experience with endo is that you are never alone, not really, because one in ten of us know exactly what it is to be thrust into a new life and a new world with no idea what to do next. We roam the world that is endometriosis like travellers in a foreign country without a map, but others help us to reach each place, even if they've only just figured it out themselves. We walk hand in hand, because we go far when we go together.
As for fifteen year old me, I hope she's happy back there in 2010, before all of this, when her biggest problem was the B she got on a paper instead an A, or whether she would get the good biology teacher next year {don't worry girl, you so did). I hope that if she knew who she would become, that she would be happy that she became me, despite the path she has to take to get here. It's pretty okay here in 2018, enjoy the ride.
You can read more of Dannielle's blog here, and follow The Daisy Diaries on Facebook and Instagram
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