Leah Filley: What's In A Diagnosis?
Leah Filley is a passionate theatre-maker, producer and pelvic pain advocate living in Naarm (Melbourne), who recently featured in Emily Loe's More Than A Statistic portrait series. We invited Leah to write a feature blog with Get Well Circus about her experiences with her pelvic pain diagnosis process. These experiences are also set to frame her upcoming documentary 'Pain & Prejudice'. Leah has also written about endometriosis for The Sydney Morning Herald and we warmly thank her for sharing her voice and personal experiences with medical system and social stigmas with us here.
A couple of days ago I saw a post in an endo support group about the fear associated with diagnostic laparoscopic surgery. Without sharing the post, it read a bit like - “I’m about to have my lap surgery and I’m just so scared they’ll tell me I don’t have endo”.
For those of us who deal with chronic pelvic pain, the biggest fear going into this surgery can often be that we will be told that we don’t have endometriosis. This is in large part due to the fact that we belong to a group that has fought to have our symptoms believed ever since we started experiencing them.
When I saw this post by someone desperately hoping to be told that they had a disease, I felt a number of conflicting feelings. Firstly, I related; their fear was also mine a couple of years ago when I had the same surgery. I had clung to the label of ‘endometriosis’ ever since I’d first heard it; it was so much easier for my friends, my family and my doctors to understand my experience if it had a name. So when I had my surgery, on the other side of which I was told that I did not in fact have endo, I was devastated. All of the shame, all of the self-doubt, all of the whisperings about it being in my head came flooding back with a vengeance.
My first experience of this horrendous pain was at age 13. At first it was thought to be an appendicitis due to the severity of the pain, but the beginning of my period did away with that idea. I’ve lived with debilitating pain with menstruation and ovulation for 20 years, along with all of the other fun symptoms you might find with an endometriosis diagnosis such as painful sex, constant bloating, bowel issues, burst cysts, fatigue, and now including severe sensitisation.
Unfortunately, the medical system perpetuates our obsession with diagnoses which in turn makes it feel as if symptoms are irrelevant. Without the endometriosis diagnosis, “maybe it’s just IBS”, or any other dismissive non-diagnosis that belittles my experience. It doesn’t matter how many times I have sat in doctors offices once again explaining that I really do have endometriosis symptoms, and that yes, my worst pain does occur around my menstrual cycle. Without the label it’s just not taken quite as seriously.
I have spent the last couple years since my surgery fighting to feel legitimate in my own experience. Samantha recently wrote about Imposter Syndrome; something that I relate to with everything in me. Every time I request to join a support group I am terrified that I will be denied access. As with many private Facebook groups, you are often required to answer questions, in this case ‘Do you have an endometriosis diagnosis’. My answer of ‘No, just 20 years of pain’ always feels somehow pathetic, it screams “FRAUD”.
The next thing I felt when I saw that post was outrage. It is so completely absurd that denial of pain has reached the point where we are hoping with all our might to have a disease. And the sad part about that, and about posts like that (unintentional as it may be), is that it further shames those of us without the diagnosis. In my research on endometriosis and chronic pain I have learned that there is often little to no correlation between symptoms and presentation of endometriosis lesions. Those with stage four endo may have no symptoms, whilst those with stage one may have debilitating pain - and of course every combination and variation of these in between. And then there are those like me; that just have crippling pain, with no answer. I was informed by endometriosis expert, Professor Peter Rogers, that a third of people who have the diagnostic laparoscopic surgery for suspected endometriosis are told that there is nothing wrong with them. What I have learned is that I am far from alone, it’s just that most people who are told they don’t have it, return to the shameful silence of mysterious pain.
In no way do I want to discount the enormous and exciting leaps and bounds that endometriosis awareness has taken in the public eye in the last couple years. I am thrilled that it is a name that is known by more than just those who actually have it. This is absolutely progress. But somehow, we need to also extend that progress to people who are lacking that one, crucial, element. What I’m hoping is that we can start to move forward to a place where hoping for a disease is not our only chance of having our pain taken seriously.
Leah Filley in a Shakespearian context, got us asking 'What's in a name?'. Photo by Jack Dixon-Gunn.
Grappling with my own ‘non-diagnosis’ has led me down a path of exploring the sheer breadth and complexity of chronic pelvic pain. And the more I learn, the more I can’t look away. I am currently writing and producing a documentary about this very topic. It is almost overwhelming just how huge the scope of this disease and this chronic pain is in our society. There’s just so many of us and we’ve been silent for so long. It’s all part of the same problem; prejudice, bias and generations of systemic silencing and shaming rather than trying to help eliminate the daily pain that so many of us live with. My hope is that if we’re loud enough, if we continue to talk, to support and to investigate, eventually this will have to change.
- Leah Filley