In the audience at a Canberra comedy gig, Nicole Seifert looks happy. This is where she fills her cup; free of ailments or worries for a while, she loses herself in laughs. The 40-year old early childhood educator and mother also sees herself up on stage, hoping one day to remember a 5-minute set she’s longing to share without having to read it off a piece of paper.
“I love going to watch comedy shows because I don’t have to talk to anyone and the comedians make me laugh. It’s relatable – and even when it’s not – it’s about bravery. No matter what has happened with their day they get up and they do their set. I admire that bravery. I want a piece of that.”
Thing is, Nicole is brave, if a little broken. But who isn’t?
I don’t know her story when we have an hour-long phone chat that I’d scheduled for 20 minutes. She laughs at my estimation, opening with: “20 minutes? You don’t know me, do you?”
Unlike anyone I know, Nicole has spent years, decades, taking on medical experts. When doctors have dismissed symptoms, she demanded referrals or tests and many proved her right. Being right is a bittersweet victory if you keep getting sick. And eventually, even those closest to you stop listening and start judging.
“I’ve lost a lot of faith in the medical profession – it’s made me advocate for my own health,” Nicole said.
“Sorting my health out has been a full-time unpaid job. It’s not glorious, but that’s it. I’ve turned into a ball of rage. Sometimes, I have too much testosterone. I’m raging. I am furious, not just about the health thing – it’s more about adulting and life in general.”
It begins in Year 8 with her last day of high school, when Nicole could barely move and ended up in hospital, having her appendix out. Looking back, she knows it was Endometriosis, but it took another 20 years, multiple ultrasounds and surgeries before she got her diagnosis. This is alarming, but not unusual. Some 10 per cent of Australian women have the disease and due to its varied symptoms, most wait seven to 10 years for a diagnosis.
“The appendix is usually the first to go because no one recognizes that excruciating pain is not right. They didn’t even tell me when I was discharged that I didn’t need to have it out, then of course I was back with the same pain three months later.
“The surgeon signed it off just went ‘it could have been a cyst’ and he grabbed the biggest needle you’ve seen and jabbed it in my stomach and said ‘you should be right’.
“I walked out in shock and I was told ‘you’re a woman who might be prone to cysts, now get on with your life’.
“I had epic quarterly pain until I had my daughter, Jamie, when the pain was 24/7. I was emotional – she was a chronic non-sleeper – I was having trouble coping that way, too. I went to my doctor and said this isn’t right.”
Nicole was sent on an 8-week course on how to be a better parent. Then, she did a 20-week course which even gave her a certificate, but it didn’t improve her physical symptoms. So, she told the doctor she wasn’t leaving until she got a referral to an Endometriosis excision specialist. When she finally got to that specialist, he did an ultrasound on the spot and she was immediately diagnosed.
“It was like saying ‘Fuck you!’ to every doctor who went before,” Nicole said, letting out some rage.
“It’s the whole identity thing – we’re female and we have to put up with it. As soon as you have a baby, you lose your identity as a person – so if you go in with a physical problem, it’s no longer physical, they see it as psychological.
“That was just the start of my health journey. Now, I advocate for women’s health as a whole.”
It’s been a long journey, too. In 2014, Nicole had to have a hip replacement after an earlier operation, performed by Orthopedic surgeon, Dr Richard Hocking, failed. This doctor would later feature in many articles with tags like “controversial” and “unsatisfactory” and move to Northern Queensland to practice.
The battle has hardened her, but given her an advocacy role that suits her: Nicole is now her mother’s carer, her medical power of attorney and advocate after her Mum lost her bladder to Cancer.
“Mum has told me there’s no way she could have ever spoken to doctors like I do, never thought to question them the way I do. She would have accepted what they said without question.
“So, I must have done something right.”
When people dismiss her health challenges with comments like “what now?” or accuse her of being a hypochondriac, Nicole doesn’t rage.
“I feel more educated than they are – I’ve got medical proof that I’m not a hypochondriac. They’re ignorant because they won’t even sit down and look at your tests. They don’t want to know anything about me. They don’t want to learn or know, they just want to judge.
“I’ve got a family history of cancer and it being dismissed – my Grandmother was told in the 80s ‘it’s all in your head’, then when she collapsed it was ‘Sorry – you’re actually riddled with cancer and it’s through your body’. The same thing happened to my Aunty.
“I get overly paranoid but I’d rather be thorough.”
Nicole has two children, Jamie (3) and Owen (7) whom she co-parents with her ex-partner. She would have loved to have had more, but she had a hysterectomy to treat Adenomyosis (a sister disease to Endometriosis) and do what she could to reduce the risk of damage to her bladder, after her Mum’s Cancer diagnosis.
She’s “bullied” a doctor to test her for hypothyroidism after being told to do a 6-week pain management program. Sure enough, she was diagnosed with Hashimotos, a thyroid disease.
“I don’t rate the medical profession higher than mechanics,” she says.
“My advice to anyone is catch it before anything bad can happen. If you feel like you’re being dismissed by your doctor, don’t leave! Barricade yourself in there and have a referral written. At least their basic duty is to refer you on to someone. They’re not above you. Get a referral for blood tests or to a specialist. I didn’t wait for permission, I got a referral and a diagnosis – that’s where my journey started.”
So where does this leave her?
“I used to be normal – this is my new normal. I believe you can choose to be happy, to an extent, but I don’t think it’s sustainable. I can choose not to rage, but someone’s going to fuck that up in five minutes.
Besides, she agrees, there’s a place for rage.
“Rage is useful. Be angry. Be assertive. Advocate for yourself. Rage is a feeling. You’re allowed to have it.”
Just last year she celebrated her 40th with a comedy night fundraiser for Ovarian Cancer in her name. Next year, she hopes to deliver a whole comedy set on women’s health.
“It doesn’t matter if they don’t laugh – at least I will have educated people.”
And so she has.