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The grit to bloom with Haylee Penfold

The grit to bloom with Haylee Penfold

From the outside, Haylee Penfold might look like your average 22-year-old, but living with two invisible chronic conditions means that in reality, she is much more.

Haylee lives with Postural orthostatic tachycardia syndrome (POTS) and endometriosis. POTS is a rare condition that affects blood flow with varying symptoms that range from lightheadedness, chest and abdominal pain, exhaustion and a disrupted heart rate. Endometriosis occurs when internal uterine tissue grows outside the uterus and also has multiple symptoms such as severe pain, excessive bleeding and fatigue.

Both have drastically changed her life. Her long journey has involved misdiagnosis, multiple surgeries, pain, and a lot of distress, but the toughest challenges for Haylee have come from looking perfectly fine from the outside.

“I have been judged A LOT by people in public settings… for using my disabled parking sticker and walking out of the car and being told I’m not disabled. I’ve been given a lot of glares for using my wheelchair, standing [for a second] and then sitting back down,” she says. “The fact is, when I am using those tools, I’m on my bad days when walking around the shops is too tiring or I’d recently fainted and need that extra help to get me to an appointment.”

Unfortunately, Haylee is adept at incorrect assumptions that began when she first started feeling unwell. “I started feeling really fatigued in high school, I would struggle to stay awake in classes and when I first went to a GP they told me my iron might be low. Then, I started to feel really dizzy whenever I was walking upstairs or doing PE, I told my GP about that as well and I was told I was just a young woman and low blood pressure is normal,” Haylee says.

She listened to her doctor’s advice and when she started to faint every few weeks and saw the doctor again, she was told that it was because of her period. When it got to the point that she couldn’t go to school because she was fainting daily and exhausted, she was referred to a cardiologist, only to be told to see a therapist for what he believed was anxiety-induced panic attacks.

“I honestly gave up for a couple of months and was starting to think maybe it was all in my head because these doctors probably knew better than me and maybe I should just accept it,” Haylee says. When she felt the resolve to do her own research, she made an appointment to see a new GP armed with rigorous notes that she’d taken about how and when she would faint as well as her symptoms.

“’Have you ever heard of POTS? It was on an episode of House once,’ he said, and I laughed and that’s how I started on the diagnosis. It took five years [before anyone] suggested that what I was experiencing was POTS. Then another two years to find a cardiologist that knew how to properly diagnose it,” says Haylee.

Diagnosis involves being strapped to a bed for up to an hour while it slowly tilts to vertical until you lose consciousness. “As much as I hated that experience, I was so happy my symptoms and fainting episodes were being captured, and someone was finally listening and taking my symptoms seriously!” Haylee says.

Her road to an endometriosis diagnosis wasn’t as fraught but did start with a lot of doubt. “For years I’d experienced really painful periods, so painful I’d be throwing up from the pain. I thought this was normal. I had this idea that every woman’s periods were meant to be painful. It wasn’t until I started having sex that the first red flag went off in my head,” she says.

After her mother told her that her pain wasn’t normal, she saw a GP and was referred to a gynaecologist. She was put on a contraceptive for a six-month monitoring period but the pain was so excruciating that she was back at the gynaecologist within two months.

“She told me she could do a laparoscopy surgery to look inside and see if anything was wrong but that she doubted there would be. I pushed for her to do the surgery because even if she didn’t find anything, I’d be assured there wasn’t anything wrong, and maybe this would be something I would just have to live with,” Haylee says.

The surgery revealed evidence of endometriosis on multiple organs. “It was all over my insides!” Haylee says. But she describes that moment as ‘bittersweet’ and ‘assuring’ because she at least knew the cause of her pain.

The diagnoses were a relief but just the start of a challenging new chapter. “It has been a lot to comprehend and often causes a lot of disassociation within my body, it doesn’t feel completely mine sometimes because I cannot control what’s happening inside of me,” she says.

Mentally accepting her conditions was another change that she was grappling with. “I was at the age where everyone else was gaining new levels of independence while I was losing almost all of mine,” Haylee says. At her lowest point, she needed constant care and assistance. “Before becoming sick I had a goal to have my licence and move to Sydney for university to live with my friends I had there. It was a goal I really struggled to let go of because none of those things were possible,” she says.

While Haylee watched her friends learn to drive, she was being showered in her Nan’s shower chair. She had to let go of dancing at concerts and accept sitting at the stalls instead. But these were changes that she knew were essential for her health.

“I tried to deny my illnesses for a long time and ended up putting myself in danger because of it. I’d passed out in a mosh pit a couple of times before it took me to realise that I just can’t do things the same way I used to,” she says.

Thankfully, Haylee had her partner and mother to help her navigate these changes.
“What has kept me strong is my mother and partner, they are always there waiting after every surgery on the other side of the hospital doors with my favourite meal and hugs telling me they’re proud of me. It definitely hasn’t been all sunshine and rainbows; my partner has been there for the lowest and ugliest of times and still sticks with me with a joke to make me smile even when I’m crying in pain,” she says.

She’s also been able to manage her pain using medicinal marijuana after almost becoming dependent on oxycodone – a decision that came with some judgement. “I was a little hesitant to use it as regular pain management at first, mostly because of the stigma. I’ve had some people frown upon my decision and my reaction is always this, ‘if you accept alcohol and cigarettes why can’t you accept a natural pain killer?’ The only way we can dismantle the stigma surrounding marijuana is education and open minds,” she says.

Raising awareness of her conditions is also something that she advocates for through her work as a writer and with fundraising. Not just to provide information for those living with these conditions, but also to help the wider community understand what it is to live with invisible, chronic pain.

“My advice for the people with loved ones who experience invisible pain or chronic illness is to listen to them and their pain. If they are struggling and cancel plans, don’t take it personally, they are probably feeling awful about it… Respect their boundaries, they may only be able to hang out for small periods of time before their already limited energy runs out,” she says.

Haylee also encourages anyone struggling with a diagnosis to fight for their right to be heard. “If you know deep down that something isn’t right within your body, don’t give up on finding a reason. Take the time to record your symptoms and when you experience them. If you feel you aren’t being heard by your medical professional, find another one. You have the right to be listened to and have your experiences taken seriously,” she says.

Her fight and resilience allowed Haylee to come to a place of acceptance. “While I might not be in Sydney studying at my dream university living with my friends, I am living with my partner in our own little rental with our dog, Sam. I study online and I’m still pursuing my dream of writing just in a different way than I had imagined,” she says.

She is living proof of her favourite mantra, ‘you grow through what you go through’ and is the embodiment of her Powerpants affirmation: “I am flourishing.”

 

About the Author

Alegria Alano is a roaming writer and a bottomless pit of curiosity. Most of her time is spent exploring new places, interesting ideas and fascinating people. She writes about what she discovers in a diary, on alegria-alano.com, and more regularly on the gram at @alegriaalano.

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