Stories from the 'First Person Health' workshop

[00:00:00] This is Overlooked and I'm Golda Arthur. Overlooked is a podcast that is really built from the personal narratives and experiences of women. Because each of these individual stories matter, and each of these stories can tell us something larger about women's health. This episode features stories from First Person Health. It's a workshop which teaches people to tell the story of what happened to them. How their health, their bodies and their lives changed from the first person health.

[00:00:32] From an illness, a diagnosis or a life event. Health stories are visceral and embodied and they're often hard to tell for this reason. But in telling them, we process them better. We understand them differently. And maybe we come to terms with them finally. We find a way to make peace with what happened. If you have a story about your health journey that needs to be shaped and shared and preserved, that's what First Person Health is for.

[00:01:02] Check out our show notes to find out how you can be part of the next workshop. For this episode, let's start with hearing a story from Patsy Day.

[00:01:19] The house is quiet, so I'm taking this moment to look at his paperwork. Jack's paperwork is in the garage. I'm just going to go inside to get it. It's always a little cold in here. And the light takes, ah, there it is, a couple of seconds to get it.

[00:01:43] Turn on. The garage is as you'd expect. The tumble dryers stacked on top of the washing machine. There's a pile of bags. I sort of have to step over my holiday bag.

[00:02:02] Let's see. Ooh, okay. There's my box of paperwork. I'm looking in particular for the letter with the autopsy results.

[00:02:23] My mum always says I was born under a lucky star. When I was a kid, I entered a competition and won a car. And I wasn't actually old enough to enter the competition myself, so I entered my sister's name. But those kind of things just seemed to happen to me. And I had this innate belief that everything would just kind of work out as it should.

[00:02:50] And then in 2010, when I was six months pregnant with my first babe, my sister called to say that a pretty routine operation on my dad had not gone well. And that we needed to get home quickly and now. My husband and I flew home the next night. My dad didn't make it, but I did get a chance to say goodbye.

[00:03:18] And I got to spend a whole quiet, sad, beautiful month with my mum where we'd sit in bed and drink tea with the sun across our laps. And I reread all my favorite books from her shelf like Anne of Green Gables and Brother of the More Famous Jack and 64 Charing Cross Road.

[00:03:46] It had been a decade or so since I'd last been able to spend that kind of time with her. And while my father's death was shocking and unexpected, our growing babe was just such a comfort in the way that new life can be. I had regular checkups while at home because, you know, stress. But as the doctor said, women give birth on battlefields.

[00:04:13] Yes, Jack and Will. I keep Jack's paperwork with Will's. I like to think of Will's paperwork keeping his safe. Oh, it's heavy. Here it is.

[00:04:40] Clinic date, 13 January 2011. I met with Mr. and Mrs Day today to discuss the tragic stillbirth of their little boy on 29 November at 37 weeks. On the last Sunday in November when I was 37 weeks pregnant, Will and I were out shopping for a pram.

[00:05:09] And the hospital called to say that an appointment had opened up for a final checkup. It was meant to have taken place on the Thursday, but when we had arrived at the hospital, they had said they'd been too busy. And would we come back again at a later date? At the hospital, it was the first time we were seeing the labor wards. And, you know, there was the usual round of first time parents, sort of the nervous anticipatory smiles.

[00:05:38] And the midwife measured my girth. And then I hopped on the bed for the ultrasound. And the midwife said, sorry, the gel is always cold. And then she listened for a bit and then she nipped out the room and returned with a second, more senior midwife.

[00:06:03] This had been Mrs Day's first pregnancy and it had proceeded without complication. On the Sunday, unfortunately, a fetal heart could not be picked up and ultrasound confirmed that he had sadly died. From high on the hill, the hospital has a wonderful view across Oxford.

[00:06:29] It had started to snow and the city was unnaturally quiet. Labor was induced. He weighed 2.8 kg and Mrs Day made a good post-operative physical recovery. Extensive investigation has shown no clear cause in that the post-mortem was normal

[00:06:54] and her autoimmune, thrombophilia and liver function, renal function, thyroid function are all normal. And her bile acid level is also normal. The little boy was on the 53rd centile, customized for constitutional determinants of birth weight. And therefore there was no evidence of placental insufficiency. There was also no maternal pre-eclampsia. All the tests showed I was in good health. Rude health, in fact.

[00:07:23] Such rude health that it was offensive. And my body, so proud of the first baby I had made, went on to fill my breasts with milk. And our baby Jack was also perfect. Perfectly formed. Perfectly fine. Just dead. We are therefore left with an unexplained antepartum stillbirth.

[00:07:53] And statistically this is better than if we are clearly finding a cause, because the latter would have a significant recurrence rate. They have had a very difficult time and appear to be coping extremely well. I've suggested they do not wait longer than a year, but not less than six months. And I will be very happy to see them after the 12-week scan in the ultrasound department here. With best wishes, yours sincerely.

[00:08:21] There was no reason why we couldn't go on to have a live baby. See how lucky I am. There's one more punch to the ovaries. Remember that Thursday hospital appointment where we attended, but they were too busy. Not enough resources meant we were sent home without being seen.

[00:08:47] Later, the consultant, unaware of that appointment, casually said, If you'd come in on the Thursday, perhaps we could have saved him. Jack was stillborn along with 4,109 other babies in 2010. Since then, the rate has fallen, but progress has stalled and eight babies are stillborn every day in the UK. With Asian and black babies twice as likely to be stillborn than white ones.

[00:09:15] Only 2% of all health research funding goes to maternal health. Clinical research in pregnancy is genuinely complex and difficult. But the underfunding of stillbirth research is also a political choice. And it's no coincidence that it is a choice that has been made repeatedly about women's health. Without political will, research and money, we can't change what lucky looks like.

[00:09:45] That was Patsy Day's first-person health story. Our next one comes from Leah Wittenberg. I'm sitting in this big chair in the corner of my hospital room. I have a window to the left of me and it overlooks the roof.

[00:10:13] And it's been raining for the three days that I've been in the hospital. I have a ton of IVs in me. My arms are all bruised from all the IVs these past few days. And my hospital bracelet on my left hand says that I'm 30 years old.

[00:10:42] And I was admitted on December 4th. I have this huge tube up my right nostril, down my throat, that goes into my stomach. And it's sucking out all of the contents of my stomach. My mom and partner are in the room. And it's nighttime. And this surgeon comes in.

[00:11:07] And he tells us that my first emergency surgery three days ago didn't work. And that I'm going to need another open abdominal surgery that evening. And I feel my body just deflate.

[00:11:37] I feel tears prickling in my eyes for the first time. I feel that lump in your throat that you get when you're trying not to cry. And all I'm thinking is that this will mean I'll have to go that much longer without water and food. I can't believe it.

[00:12:06] This started six days ago when all of a sudden I just had this awful shooting pain in my upper left abdomen. And I pushed through it. I didn't want to miss work. And it just got worse.

[00:12:28] And so I ended up seeing an urgent care doctor who took an x-ray in labs and told me that it was just my IBS. And I needed to take better care of my body. And then the third day, I didn't work for the first time in the two years that I'd been at my job. And I saw my GI who told me that it was just constipation.

[00:12:57] And he instructed me to drink a laxative, which I did. And over these three days, the pain just got worse and worse. And it spread to my entire abdomen. It was fiery. It was raw. It was like nothing I'd ever felt before. By the end of the third day, I just couldn't move.

[00:13:24] I found myself on all fours on my bathroom floor with my hands on the cool tile and my feet resting on this blue plushy bath mat. And my abdomen was so bloated and rigid and distended. It felt like it was touching the ground. And at this point, I was able to get a CT scan.

[00:13:50] And just drinking that white chalky substance was almost impossible. I started throwing up. I was profusely sweating. I was shaky. I felt like I was going to pass out. Almost immediately after I did the CT scan, I found out that I had a massive abdominal perforation.

[00:14:23] It would turn out that unknowingly, I had this pretty common bacteria, H. pylori, that causes stomach ulcers. And also unknowingly, I apparently had a stomach ulcer. I have no idea how long I had it for. I didn't have any of the symptoms. And it just, I guess, got so bad that it just broke through my stomach.

[00:14:49] And it was super rare. And that is what was happening for those three days was stomach acid was leaking out into my abdominal cavity.

[00:15:09] And there, you know, was so much free air and free fluid in my abdomen that I was in sepsis. I, you know, probably I had a mortality rate of maybe more than 70%. I was so close to dying and I had absolutely no idea.

[00:15:35] I was just thinking about work. And because I was so sick, the first surgery where they patched this ulcer in my stomach didn't hold. So I ended up having this second surgery on my third day in the hospital where they took out that part of my stomach and stapled it. And that did luckily work.

[00:16:04] But I ultimately spent eight days in the hospital. I had to learn how to eat again, what my body could even handle, how to walk. I could barely walk when I first got out of the hospital. And I spent months and months recovering. This happened to me a year and a half ago. And I'm physically recovered.

[00:16:34] But I've spent so much time thinking about, you know, how this has changed me. And trying to make meaning from it. And I realized that I had expressed all of this right when I left the hospital. I wrote the following in my journal the day after I got out of the hospital. I have a renewed zest for life.

[00:17:01] When I was in the hospital, I'd find myself picturing me in the future. And she wasn't a high-powered career woman. I mean, maybe she was that too, but that wasn't her identity. She was in the mountains, in a breezy dress that showed her scar. She was dancing. She was happy. Content. Joyful. Free. I'm taking so much from this experience. Not caring what others think. Truly not caring.

[00:17:30] Wanting to actually live life and not just be in it. Seeing the value in marriage and the beauty in soul partnership. It's so much. Those are some of the beautiful light things. And there is so much dark, too. The trauma. It comes back to me. Last night, even. There is so much to process and to unpack. But there is so much more light than dark.

[00:17:56] That was Leah Wittenberg's First Person Health story. First Person Health is a workshop that gives listeners like you a chance to create immersive, powerful storytelling about women's health. The kind Overlooked is known for. And it's built around your story. That's what you learn in this class.

[00:18:23] And if you think you're ready to do that and want to learn how to do it in sound, sign up for First Person Health at the link in our episode notes or drop us an email at hello at overlookedpod.com. Thanks for listening. Overlooked is here for information and empowerment, but not medical advice. Every person's body is unique. So if you have questions, it is best to speak to your doctor or health care provider.

[00:18:51] We're building a community around women's health so that no one is overlooked. If you'd like to be part of it, hit the follow button on this podcast wherever you're listening to this. Or you can show us some love by writing us a review and sharing this episode with someone. Overlooked is written and created by me, Golda Arthur. Jessica Martinez-Dijos is the show's producer. You can stay up to date with the show by signing up for the newsletter and following us on Instagram and LinkedIn.

[00:19:20] We read every review and email. So write to us, hello at overlookedpod.com. Thanks for listening.