This time last semester I was writing a piece of research which was, for me, the hardest I’ve ever written. It wasn’t the structure or the requirements that had thrown me despite the new and challenging course content, it was my research subject. The class was advanced qualitative inquiry, a research methodology class where we were able to study whatever we wanted as long as it involved existing data such as online comments, blogs, newspaper articles etc. Inspired by the work of online support communities such as Syl and Lesley Freeman’s EndoActive AUS & NZ and Endometriosis Australia I decided to do a thematic narrative analysis of some of the extraordinary stories told in these communities. For ethical reasons I cannot share that analysis here, but those stories are readily available for anyone who is part of these online communities; the sharing and support is amazing and I’ve never seen so many strangers so willing to guide each other through the often frightening and tumultuous world of chronic pain. I found as I wrote my analysis it became harder and harder to do so without my own emotions getting the better of me, and that’s because I am currently in that frustrating land known as disease limbo…where you’re waiting to find out what the hell is wrong wth you. It is in this way that chronic pain and the process of diagnosis can trigger an identity crisis.
Before I started on this journey I was someone else. That girl wasn’t perfect, she overthought, overstudied, and under-appreciated herself on so many levels; but she didn’t know what I know now. That girl knew about endometriosis from a book she’d read at fourteen about a girl with an eating disorder who also ended up with endo (how prophetic), but she hadn’t thought on it for more than the length of the page. That girl started to become me at the age of fifteen, sitting in the corner of a library wondering “what fresh hell is this?!” as she began to notice the pain. The word endometriosis was offered to her by a concerned person, and it began to grow on her. It would take that girl until seventeen to fully become the person that I am now. At seventeen I had been trying to manage that pain all the usual ways, my GP asking hopefully every time I saw her: Is it feeling better? At eighteen I had myself a referral and I learned that when someone actually knows what they’re talking about they work fast. It took a gynaecologist all of thirty minutes to decide to not just wait around, as had been my process for so long, but to figure it out once and for all. Unfortunately the only way to track down endometriosis is to go straight to the source…exploratory laparoscopy. That was a year and a half ago. What you may already know about fast-acting specialists is that they’re not cheap, especially if you’d never thought to get private health insurance. So I’ve been waiting, and luckily it won’t be too much longer. But the wait is torturous. Many a diagnosed endo sufferer will tell you this, and my research project highlighted it, but the waiting around in disease limbo to figure out the reason for your pain is hell.
The main reason for this is that time is a fickle friend…if surgery scares the crap out of you time whispers calmly in your ear: “that’s a future you problem”. But time betrays you just as easily when you spend your time wondering what is really happening. There is a crisis of identity as you pass from being your old self, the one who knew so much less about what you know intimately now, to being someone with whichever disease you happen to draw. The time spent in the middle leaves too much time to think. The thought that I find comes up frequently, and research has told me is a thought I am not alone in, is that maybe I am crazy. Perhaps it is all in my head. Maybe I have a really low pain threshold and just cannot deal. All of these thoughts happen and make you doubt yourself and you begin to believe the crap rhetoric that is delivered to women in pain (suck it up, it’s normal, it can’t be that bad, it’s all in your head..etc.). It takes all of five minutes for me to realise how wrong I am when the pain starts. You realise it can’t be in your damn head, because it hurts too much.
The identity crisis also comes from knowing what you “probably” have, but not knowing for sure. Sometimes I feel like I am between two glass windows. One is my old self, before the pain, and I know I cannot go back but I can’t go forward either. Through the other window is everyone diagnosed with what I probably have, and while some of the things I see are terrible and terrifying they have each other and they have some kind of plan. It becomes a terrible curse after a while that you just wish you have it, because at least then there is a reason for your pain. It has a name, one that can be used to come up with a plan, one that can be thrown in the faces of those who spurt the crap rhetoric (Ha! In my head is it? Then what’s this?). I have come to a place where I am ready to be the girl who has endometriosis, because that girl will be so much more than just that. That girl will be able to carry on knowing that it is just another part of her, not her whole life. I am ready to be that girl because I cannot be this one any longer, the one who doesn’t know who she is yet. It is a sad feeling to be comforted by your specialist saying, “don’t worry, I’m pretty sure this is what you have”, because not knowing is just the worst.
The crisis of identity in the journey to finding your answer is one of the hardest things in chronic pain. The human mind seeks a logical resolution, an answer; we don’t like unanswered questions. So the psychological torment that I know is suffered by so many on that journey is one that needs to be talked about. I am grateful for those brave women who tell their endo or adeno or PCOS story, knowing that there is solidarity and empowerment in shared narrative…it is you who have empowered me with the knowledge to be unafraid of the diagnosis which may lie ahead. But for every other person who is suffering that identity crisis, know that I stand in solidarity with you. Qualitative data is some of the richest and most powerful in the field of sociology, and I have come to prefer this methodology because of all that I found out. Every comment, every blog, every post made about this harrowing journey is one that helps another recover their identity in the face of the unknown.