Yesterday, in a small surgery in East Sussex, there was you, the male doctor, staring blankly at me, the woman that was asking for your help. You, choosing only to talk to question every one of my reasons. You, the health professional, who claimed to know everything about an illness you don’t actually treat. You, who got away with talking down to me, your patient.
People with cancer get referred to specialists, people with knee injuries get referred to specialists, those who are worried about their hearts, get referred to specialists. But for a woman like me, to be sent to an expert on the chronic illness that limits her life every day, asking becomes begging, then arguing, then a shaky yet polite goodbye, with all of my hopes in your hands. Even after you, rolling your eyes, told me that all of my efforts would probably mount to nothing, still, yesterday I placed all of my hopes in your hands.
I was OK with your perplexed look as I expressed my desire to be referred to a specialist. I even researched NHS hospitals, bringing you a list of places you could refer me to. I quietly nodded when you reminded me of the “poor state of almost every hospital”, in the same flat tone in which you questioned my reasons for seeking better treatment.
I barely blinked when you sat in silence after I told you how I had been waiting months for appointments that kept being re-scheduled for no reason.
I wasn’t surprised when you attempted to berate me for something I wasn’t even going to do: not show up to the appointment that keeps being pushed back. Adopting a serious yet courteous tone I had to defend myself, assuring you that as a responsible grown-up woman, if I had no intention to honor the date, I would cancel and free it up.
I didn’t even mind when you attempted to “mansplain” the basics of my disease, even after telling you how I had lived with it for over a decade, and that I had extensively researched it, before and after my diagnosis.
I get it. I’m not a doctor. You are.
You are the doctor. I am the patient. You the carer, me the diseased. However, why did you have to make it about: you the man with the power, me the woman fighting to have a say on her body? Why did it become: you the man with the resources, me the woman who had to beg for help, fingers interlaced like a little girl?
I hold no ill feelings towards you. I couldn’t have been any more clear about my respect for your job and that of your peers, and I meant it. I said please and thank you so much, I am sure my mother would be proud.
When you told me that pregnancy cures my illness, I politely responded explaining what was wrong with that statement. Any endometriosis specialist would tell you that it merely puts the disease on hold, and that symptoms re-appear after a mother ceases to breastfeed. You insisted, correcting yourself by claiming “some women do cure their endometriosis like that”. When I asked you for the statistics, the numbers on which you based your statement, you changed the subject.
Had I offended you? Was I a patient speaking out of line? Or had you realised the questionable nature of your statements?
Did you wake up to the fact that you are comparing small human beings to a box of antibiotics?
Did it dawn on you that having a child is a life-changing decision? Did you suddenly remember that telling someone with a condition that limits her fertility to go get pregnant, is like asking someone who suffers from Parkinson’s to try to stop their hands from shaking? Like telling someone who can’t walk, to go run a marathon because that will cure them.
Would you recommend pregnancy to a fifteen year old with severe endometriosis? How about a teenager with dreams of studying at University? Is pregnancy also the way to go for her? Are babies some sort of patch for you?
You see doctor, while my smiles and courteous tone may say otherwise, not only am I clued-up but also, pretty desperate. You, like most people around me, are unaware what my limitations are really about, because in lieu of effective medical care, all I can do is get on with my life, politely failing to mention the hell my body is making me go through.
I have spent years in severe pain, I have given up dream-jobs, the idea of having a family, and I have forgotten what having a body that doesn’t hurt for no particular reason feels like. Every month I have to lie down for days and cannot function unless I am high on painkilling substances. I also suffer from chronic fatigue, which pushes me into a depressive state, more regularly than anyone with no endometriosis. The list goes on, but it isn’t pretty. I know fellow sufferers who have had segments of their organs removed, in an attempt to ease the symptoms.
I don’t expect a cure, but I require effective treatment, or at least one medical professional to listen to each and every one of my symptoms, and point me in the right direction. One doctor to understand the condition, guide and support me until I can function the way any person in their 30s can expect to function.
I don’t need the patronising. I am a woman, not a child.
I don’t need the perplexed stare: I have educated myself during the 5 months it took me to get a post-op appointment. The folder I hold has all of my medical records, which I know by heart.
I don’t need to be told to become a mother: My uterus has belonged to me since the day I was born. Excuse me if I’d rather not let you, a man, dictate what it should do next.
I shouldn’t need to beg you, so don’t make me do it: it is my right, as an endometriosis patient to be referred to a specialist.
Ten percent of women have it. Millions worldwide have it. Endometriosis happens as often as diabetes, but it goes untreated for years. The average woman has to spend around 8 years chasing doctors, begging for help, carefully placing her “please and thank yous”, until she gets diagnosed. Endometriosis doesn’t kill you but, like cancer, it grows and worsens with time. It limits women’s lives. It’s chronic.
Enough already, doctor. Enough with the limited knowledge on this paralysing disease. Enough with the myths that are being perpetuated by stubborn professionals like you. Enough with men having a say on what goes on in our wombs and our lives. Enough with not listening, enough with dismissing our complaints as stress. These are not Victorian times, hysteria is not the category under which everything relating to women falls. To you, I probably looked flustered and emotional, but I had to repeatedly defend myself, like a criminal in court, wanting to be believed. Except you’re not a jury, and I am not on trial.
Be part of the change. Consider that maybe I am not crazy. Open your educated mind to the possibility of learning something from your patients. Allow yourself to be a better professional by questioning your beliefs, and looking into a disease that is being completely ignored.
I know there are barely any funds, I know you are probably overworked. But you get to walk out of your surgery a healthy man. As I exited, I felt the familiar sharp pain from the top of my right leg to the end of my spine, reminding me of the cluster of cells that used to make me limp.
Endometriosis is sabotaging my body. All of my hopes are in your hands. Stop being the man with the power us women have to battle. Be the professional carer you set out to be.
Please, and thank you.