On December 17th I graduated from my Bachelor of Arts majoring in Criminology and English Literature, two areas that have vastly changed the way I see the world and make me think critically about everything I read or hear. I am also completely abandoning them to go into nursing, sorry Lit…apologies criminology….it’s not you, it’s me. But for me nothing is ever a waste, I learn something new from everything and truely believe the world would be a better place if more people had Arts degrees (politicians, I speak of you). One thing I certainly gained from my literature degree was the ability to write a damn fine piece of writing…fiction or non-fiction. Qualitative inquiry class in sociology taught me the importance of the personal narrative and how uncovering people’s stories can be a catalyst for social change. So I’m doing something with them. I am starting a long-term project: it’s a book, a book about the experience of having endometriosis.
Talking to other sufferers I realise one thing most of us can agree on is that this disease is poorly understood and not just by the general public, some doctors cannot even seem to grasp that pain that puts you in bed half the month is not normal, and it’s not “all in your head”, it’s an incurable chronic disease. I want to write about what it is like for women with this disease at various stages…I’ve only just begun my journey so I need the voices of those who are further down the road. These stories will stimulate a discussion of fundamental issues with the understanding of the disease, the effects the disease can have on a person’s life, and how we can foster more awareness and understanding to enhance diagnosis and improve quality of life. It’s a big project, and will likely take me a while to complete, but that’s okay because it will mean seeing how my own journey unfolds as I discover more about what it means to have endometriosis.
So I need you Endo Sisters! If you have endometriosis and you are interested in sharing your story for this project (your identity will be protected and pseudonyms used for the purposes of ethical research), please get in touch! You can write about it, you can send me a video of you chatting about your story (and I’ll take some notes as if it’s an interview), or if you are into Art or photography you can present your story in this form and provide an explanation of what these mean to you. I’ll provide an email address. You also have the option of what you share. Given that this book is going to be in sections, have a look at some of the things below you may want to focus on (choose as many as you like to address, or add your own!): Content and trigger warning: Infertility, mental illness. Only answer things you feel comfortable with, it’s YOUR story.
- Diagnosis: When did you first start experiencing symptoms? How long until you sought help? How long did it take you to get diagnosed? What barriers did you face?
- Medical Professionals: How did medical professionals treat you when you presented to them? Were they helpful, understanding, knowledgeable about the disease, empathetic? Did you experience people telling you that the pain was “in your head” or normal, were you told to “suck it up” etc? What do you think makes a good endometriosis specialist?
- Living with Endo: what does a typical day look like for you? How has endo changed your routine? Does your disease limit you in any way? How? How do you deal with living with endo, and how do you stay positive? Have you dealt with depression or anxiety as a result?
- Treatment: what are some treatments you have undergone for endometriosis? How have they made you feel? Have they worked or failed? Has the cost of treatments been an issue? What do you think of the treatments on offer for endo?
- Infertility: have you experienced problems with fertility? Have you tried treatments or IVF? Have you been able to successfully conceive?
- Surgery: Describe the experience of undergoing surgical treatments for endometriosis, have they improved pain? Have they left scar tissue etc that have caused problems?
If there’s anything else you’d like to share, feel free! Your story will be treated with the utmost care and confidentiality and your identity will not be revealed in the publication. If you decide you’d like to share your story I will send you a consent form, as I’m treating this the same way I would qualitative research. I am also happy to send you a sample of the section your story is used in to ensure you are satisfied with it’s representation.
Can’t wait to hear from you!