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Episode Two: A social workers experience of loss in the system with Terry Diamond
813 Plays1 year ago
On today’s episode of the Miscarriage Rebellion, we welcome Terry Diamond. Terry is a former Perinatal Bereavement Counsellor, currently working as a Social Worker at the Royal Hospital for Women in Sydney. She also is a mother who has unfortunately experienced first hand multiple miscarriages through secondary infertility. Her story was one that was not met with the validation and empathy it deserved. Terry also provides us with a clinical perspective on what fundamentally needs to change so that women and their families are met with the support they so desperately need and deserve when facing pregnancy and infant loss.
Learn about The Royal Hospital for Women Foundation
EARLY PREGNANCY LOSS SUPPORT
If you or someone you know has experienced miscarriage or early pregnancy loss, please know you are not alone.
- For crisis support, please call Lifeline - 13 11 14.
- Access all our support
- Join Online Communities
- Emotional Support Resources
- Follow @pinkelephantssupport
STACEY JUNE LEWIS
If you’d like to reach out to Stacey for counselling she is currently taking new clients. Find out more via her Website or Instagram.
You can also follow her personal Instagram account where she shares some of her lived experience.
JOIN THE MISCARRIAGE REBELLION
Pink Elephants believe everyone deserves support following the loss of their baby.
We have been providing support to many ten's of thousands of people for nearly 8 years, raising funds through generous donors. We now need ongoing Government support to empower our circle of support.
We are calling on the Government to provide us with $1.6million over 4 years to help bridge the gap. Sign our petition.
Early pregnancy loss is not just a private grief, but a national issue that requires collective empathy, awareness, and action. By recognising and addressing this, we can make meaningful change in the lives of 100,000+ women who experience early pregnancy loss every year.
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Transcript
Introduction to the Miscarriage Rebellion
00:00:03
Speaker
Welcome to the Miscarriage Rebellion. I'm Sam Payne, CEO and co-founder of the Pink Elephant Support Network.
00:00:10
Speaker
And I'm Stacey June Lewis, counsellor, psychotherapist and broadcaster. This podcast is where we share stories of many Australians who have lost their babies to early pregnancy loss. With evidence and empathy, we unpack the shame, blame and stigma and the lack of support that many face. This is a loss that has been silenced for too long. We deserve better. We are here to normalise the conversation. And we're here to make lasting change.
Terri Diamond on Systemic Change
00:00:37
Speaker
Welcome to today's episode where we welcome Terri Diamond, social worker for the Royal Hospital for Women and former perinatal loss counselor. Terri, like many of us, has her own lived experience, which we'll unpack, but she also brings an element of a clinical lens that she gets to bring to this podcast.
00:00:54
Speaker
Hopefully, show us what needs to change within the health system. What can we do better? What can we do more of to make sure women are met with a validation, empathy, and support that they so badly deserved? Really excited to get into this interview today with you. Terry has been a longtime supporter of the work of the Pink Elephants. Right back in the early days when Gabby and I met Terry for a coffee in Bondi Junction, we had all these ideas of how we wanted to support women and make sure no one felt alone in their grief.
00:01:23
Speaker
Harry brought all of her wisdom and knowledge, clinician knowledge as well, to let us know how we could help people, but also made it more than just a sad place where bereaved parents would connect. You really helped to build the foundations of our peer support program and ensuring that we were underpinning everything we did with evidence and empathy, and that we were training up our peer support companions in such a beautiful, heart-led, appropriate, and safe way.
00:01:50
Speaker
It really has made a difference to how we've gone forward with that program and how it's been accessed and how our peer support companions also feel really valued in their role and how cathartic that role has also been for them as well. I want to extend a huge thank you for that. But for the benefit of our listeners today, I think it's always a really important place to start with your story.
Personal Miscarriage Experiences
00:02:13
Speaker
your experience so if you could tell the listeners what your experience of miscarriage is. So sure my experience goes back probably 19 years now when it all started so I had baby number one no complications really.
00:02:28
Speaker
quite easy. I fell pregnant with baby number two when I was on the contraceptive pill after a general anaesthetic. And so I didn't actually find out I was pregnant until the Christmas day, my birthday. And by the 31st of December, I had miscarried that baby. But I was kind of okay with that because my first child was only about seven or eight months old and I wasn't expecting to fall pregnant or trying to fall pregnant.
00:02:56
Speaker
Of course what that miscarriage did was trigger an extreme urgency to get pregnant and have another baby. And I was lucky enough to fall pregnant about four months later and have my son with no complications. So I had the two, two years apart.
00:03:13
Speaker
And then decided I was going to go three for three. Three young nappies in and out, fell pregnant again really quickly and had a miscourage, found out at 17 weeks pregnant that I had lost that pregnancy a couple of weeks prior to that, around 15 weeks, I think baby measured. And it absolutely turned my world upside down, rocked me to my core.
00:03:38
Speaker
But my attitude at that point was to very quickly get back on the horse, get pregnant again. And I thought like last time I had a miscarriage, I'll get pregnant again, all was fine. Got pregnant again within three months. And when I went for my 12 week scan, that baby had died too. And that then sent off three years of ongoing miscarriages. I lost nine pregnancies in three years.
00:04:07
Speaker
fertility treatment where the marriage was on the brink of collapse because we could no longer have trying to concede sex. So six rounds of IVF, never felt pregnant from IVF. And eventually went to the alternative therapy and was told by kinesiologist I had something in my body, killing my baby. Went to, with that information to my fertility specialist, he told me not to bring Eastern mumbo jumbo into his office.
00:04:35
Speaker
and through a lot of hard work and internet searching because that's all we had. There was no supports available other than the old internet search. I was lucky enough to find Gavin Sacks who was just beginning to bring to Australia the testing for natural killer cells and at that stage
00:04:54
Speaker
you need to have your bloods done far, far away from home, wait for three weeks while they went to the UK and then came back to you. And it came back that I had natural killer cells. So with treatment, the next name, the pregnant zone and the aspirin, I managed to fall pregnant with my now miracle who just turned 16.
00:05:15
Speaker
that those three years of my life, I think to this day, are still of man. Ten babies, ten babies, and yeah, three years. I'm sorry, Terri. And I think we have really realized with this process and this podcast that, you know, time does something, but it doesn't make things disappear. It doesn't. It's such a soul shaping experience. And I want to talk to you about that because
00:05:44
Speaker
You found it such a soul shaping experience that it really did start to change your life. Could you tell us a little bit about what happened from those losses, how it affected your life, not necessarily from straight to those positive effects, but at how it all kind of really started to impact you as a woman and what you were doing and how you were living. You mentioned the relationship stuff. We know that your career changed, but I'd love to hear a little more about the story as a whole.
00:06:13
Speaker
So
Lack of Support and Need for Validation
00:06:14
Speaker
I think I've never felt lonelier in my life than I did when I was going through those miscarriages. And I was desperate to look for support. So after the third miscarriage, I actually went out to see a couple of psychologists really just seeking that support, that validation that I needed, that I was not going crazy. And that the fact that this, you know,
00:06:39
Speaker
cycle of pregnancy loss, pregnancy loss had consumed my entire life. It was not because I needed treatment for something that had happened, but rather just somebody to recognize what I was going through and to really validate my day-to-day shitty experience.
00:06:56
Speaker
And I just could not find the support. So me being me, I decided that I was going to go and study counseling because I was going to A, support myself and B, fill in a gap of supporting people who were going through this experience. So I went and I studied counseling, which was my third degree and did my placement then at SIDS and KIDS, which are now known as red nose.
00:07:22
Speaker
And whilst it was very cathartic to do the counselling and to become a counsellor, what I recognised very early on was that there was not much understanding around miscarriage and the impact that that was having in people's lives. Even that organisation was really focused on stillbirth.
00:07:40
Speaker
lost over 20 weeks. And from my experience, I actually tried to get a miscarriage support group started when I was working there. That was one of my student projects. We could not get anyone to attend. So this is going back around 17, 18 years ago. And the space that we were in was that nobody really validated miscarriage. Nobody counted miscarriage. It wasn't something that people spoke about or that you
00:08:08
Speaker
acknowledged and nor the enormous massive impact in your life. So the biggest thing that sticks out to me from those three years that I was going through it is I counted my life cycle days, minutes, pregnancy tests,
00:08:25
Speaker
Scared weeks, which was a pregnancy. I think in one year I was pregnant for 42 weeks with no baby time for it at the end. And my world became teeny tiny. So any joy or love or enjoyment of my other two children, I was lucky enough to have two living children was completely overshadowed by the losses that I was experiencing and the impact that they had in my life.
00:08:54
Speaker
And through going to Sydney Kids to work, I found an amazing support person.
Finding Purpose in Counseling
00:09:00
Speaker
And after that was, you know, I think I've had seven or eight losses by then, she was the first person that said to me, I am sorry for your losses.
00:09:09
Speaker
I am really sorry for everything that you've gone through and I will never forget the impact of somebody not trying to fix me but actually just sitting with me in that space of I am sorry and what you have been through is enormous.
00:09:26
Speaker
And I think that really set my foundations for the work that I then did in my therapy practice. So I worked as a perinatal bereavement counselor for about 13-14 years.
00:09:42
Speaker
Before I ramped it up to the next level of listening to people's experiences that they were having in hospital around pregnancy loss and thinking right now I have to change that now I have to change what happens for people when they go into the health system and the added trauma that they're walking away from.
00:10:01
Speaker
when what is going on for them is not validated, worked with in a compassionate, caring and kind manner. And so I studied a Master's in Social Work and have been lucky enough to be working at Aurora Hospital for Women, which is the only women's hospital in New South Wales for the last five and a half years, really with
00:10:23
Speaker
this huge amount of passion and compassion for the enormous amount of women we see in their families coming through the system, having experienced the loss of a pregnancy or a baby. It's such an incredible story and you really touched on so many points that I know I looked at Sam that we're both relating to so deeply.
00:10:46
Speaker
I think the thing that is really unique about what I'm relating to in your story is this kind of fight and vigor.
00:10:54
Speaker
behind representation of things that you didn't experience firsthand yourself. Having opened a private practice and having a complete career change with a similar vigor and a similar passion behind supporting other women. I wondered if we could have a bit of a conversation about how important you feel that that lived experience is when people are going through specific miscarriage and like you say, early pregnancy loss.
Empathy through Lived Experience
00:11:20
Speaker
Again, obviously there's so many practitioners and specialists that are able to provide care without necessarily either exposing their lived experience or having it. However, I do want to have a conversation about that because I know from my own experience it is something that I wanted from a therapist and now is something that I am proud
00:11:42
Speaker
to give, it's obviously about the client, but that congruence in the way that you meet someone and the rapport that you can build from having walked the same path, I find quite powerful. And I'd love to hear your take on where you pull from that and the difference between that offering compared to maybe what you were getting beforehand with different therapists that may not have been able to offer that to you.
00:12:13
Speaker
So I think it's complex. Yes, I think it is incredibly powerful to have that lived experience, but just want to say that a compassionate person trained to support women experiencing miscarriage or early pregnancy loss, they can offer that support as well.
00:12:34
Speaker
I think the problem is the lack of understanding, for the most part, by those people in the support roles of psychologists as to what it actually means to support somebody going through miscarriage. Not a pathology. When you're going through miscarriage, it's a deep, deep grief.
00:12:51
Speaker
And so yes, in a way, I feel that my story makes me the compassionate therapist that I am. And it informs that many of the discussions I have with clients, as you say, it's not about me, it's about the client. But when somebody sits in front of me and says, you know, I don't know how I'm getting up to carry on tomorrow, I have never felt so alone and lonely.
00:13:14
Speaker
in my life, I don't want to see anybody or speak to anybody. Instead of finding solutions around, you know, that, yes, well, you need to get up and go to work, just being able to sit there and go, I understand. Yeah, you don't have to get up and go and base anybody tomorrow if you don't want to, and I really get that. There is so much power in
00:13:37
Speaker
connecting to the actual emotion that sits behind people's words when they're talking about the feelings and the emotions that they have around miscarriage. So yes, I think there's definitely something powerful. However, I've supported a lot of women over the years who've experienced stillbirth or the death of a child. Now, whilst I don't have the lived experience of that,
00:14:01
Speaker
Certainly my lived experience of loss informs the enormity of that. And the biggest thing for me in working in this space completely is a loss, is a loss, is a loss. Not minimizing the loss of somebody who's experienced a miscarriage at five, six, seven, eight, you know, anything really under 20 weeks, comparatively to somebody who's experienced a full-term stillbirth or a neonatal death of their child.
00:14:29
Speaker
Really just understanding that it's not about the amount of weeks you were pregnant or what that was all looking like, but just the loss of your hopes and your dreams that you had for that pregnancy, for that child, for that baby. And really just working with clients and validating that, that it's not about the amount of time. And I really think that's where we need to get to in this miscarriage space.
00:14:54
Speaker
not this oh well it was early oh well you know you can have another oh well not many people knew you were pregnant in fact i had somebody asked me the other day they were they're now seven weeks pregnant after a loss and they had a loss last year and they said i don't know whether to tell people or not do we tell people do we wait till 12 weeks you know what is safe that we really unpack that in terms of
00:15:17
Speaker
What do you want from people? You know, what do you need? What do you want? And it was really that sense of if the worst thing happens again, I just want to know that there's backup for me. And I was like, then what are we waiting to share the news for? You know, from this secrecy, which I think invalidates the enormity of the loss that people with, you know, experience when they're having early pregnancy losses and really bringing that into the space.
00:15:45
Speaker
of the enormity of what you've lost when you've lost the pregnancy any gestation.
00:15:53
Speaker
Yeah, I think I'm definitely hearing two things there. I'm hearing the need for this societal shift to move from minimizing and silencing the experience of miscarriage and having those at least comments or that you can happen again, just get pregnant again as if that just fixes it, this notion to move on from it quickly. I think we often confuse that. I know that you talked about in your story, at the point you were in it, it was a desire to fall pregnant again quickly. That didn't mean you weren't still grieving as well. People confuse that because they see that,
00:16:23
Speaker
that we're potentially willing to try again quite quickly for the outcome hopefully of a baby in our arms. They fuse that with, okay, as soon as there's another pregnancy, that one is okay again, we can forget about that experience. I just want to rephrase something that you said, not rephrase, but repeat something that you said because I think that really gave me shivers. It was that any joy in my life was completely overshadowed by the losses I was experiencing.
00:16:49
Speaker
And I think that so many people listening to this who are currently in the trenches going through this will absolutely wholeheartedly understand that. But what I want to hope is that that contributes to the societal shift as well. That everyone who is listening to this that hasn't been through a miscarriage can start to understand the magnitude and the profound and intense emotional response many women have.
00:17:14
Speaker
But I want to talk about this validation piece and how we can move forward. So, you know a little about the pink elephants advocacy work and what we try and achieve and we do things together. I know we've got upcoming things happening with hospitals to share the experience of bereaved parents.
00:17:30
Speaker
How do you think that you've been through all of these different roles? You also got the lived experiences station mentioned. How can we change this? How can we ensure that everybody is met with the validation, empathy, and understanding they deserve? What conversations need to happen? What are the things that need to happen to shift us from, at least it happened early to, I'm sorry your baby died and you're worthy of as much support as someone who's had a stillbirth or an infant death. How do we change this? It
Advocating for Empathy in Healthcare
00:17:56
Speaker
really is education, Sam.
00:17:58
Speaker
It's educating the healthcare workers who women experience loss come into contact with.
00:18:08
Speaker
If you're coming through the hospital system to experience a loss, or even through a GP clinic, it can become very medicalised. What do we need to do to keep you medically safe? How are we resolving this pregnancy? The one thing that needs to change is the term products of conception, but that's not that whole, that's not that whole mind field, so we've only got that.
00:18:33
Speaker
You know, the other day I was collecting a baby that had a DNC and so they were coming in theaters and we have a beautiful way at the Royal of looking after our babies that come out of theaters.
00:18:48
Speaker
Anyway, that's another whole story. And I've written on the pathology forms on baby to please come back to social work. And when I had come back, that had been crossed out and they had put in POC, which is products of conception. So it's such a, it is such a change in education. It's really
00:19:09
Speaker
putting that validation and that support, that emotional support right up there at the top with the medical management of what is going on within the system. And understanding that, you know, for the person who's lying there on the table or the person you're handing the drugs to, to go home and to, you know, have that miscarriage happen. This is their wealth. This is their life. This is their potential baby. These are their hopes and their dreams. And
00:19:36
Speaker
Yes, you have a job to keep them medically well and safe, but we also had an equally good job to keep them emotionally well and safe.
00:19:51
Speaker
We don't share all of our personal stories all the time, but the part that actually hurt my husband the most was when a doctor, I'd started to miscarry naturally again, for want of a better word, and then a junior medical doctor, I should say. Also, there should be some education around this.
00:20:07
Speaker
and removed the remaining products of conception and told me in just a standard room, not a special room or anything like that, in an e-path clinic, and then took us through to the next room for a consult and had the products of conception on a test tube on the table, referred to them as the products of conception, and it was my husband that turned around and said, that's our baby.
00:20:30
Speaker
It was that moment, I didn't know it's at the time, but he continually talks about that. Like he said, there's this medical management. She wanted to move me through the system. There was about 14 other women that day who needed to get through. It was a tick list. It was quickly moved through. It was that comfortable language of products of conception that we need to challenge and you're absolutely right to write baby. If anything, can we cross it back there when they put PLC and write baby again and just keep?
00:20:56
Speaker
But we shouldn't have to do this when we're in this. This should be changed for us. I really am taking from the education piece and circling back to that lived experience. It is interesting because in some notion there is always going to be that glance of knowing.
00:21:13
Speaker
between a woman that has experienced this, but I think in a way, it also allows society to leave it to them. So whilst I really took that away from your point on, whilst this experience is such an incredible offering, it is something that other people can learn. These are things that we can
00:21:35
Speaker
Activate in our practice in our lives in our compassion in the way that we are with our loved ones Every day so it's interesting because whilst as I said at the beginning of the question I am proud of that it really did open my eyes to this idea that potentially it can also somewhat work against an expectation of a bigger picture change here that it's it's women's works that need to do it privately by themselves with other people that understand it and I really
00:22:02
Speaker
Yeah i'm just really grateful for you to kind of take that conversation there and and to ensure and encourage people that. Yeah you actually can learn you just have to be open to learning and shifting and being really open to listening to what.
00:22:19
Speaker
a person may need because as we've established, it's complex and it will be different. There isn't one size fits all. So I just wanted to say that, yeah, I really took away that from the education, it is also about making sure that we don't just lean on the people that are specialists in this and expect there to be, you know, I have a friend that Miss Kerry, you might want to talk to her. Well, no, I want to talk to you, my friend that I know already just because you haven't lost
00:22:48
Speaker
Doesn't mean I don't want to be seen by you and I just really wanted to share that I, I really have kind of, yeah, I'm just been pondering that since you brought that up. Yeah.
00:23:00
Speaker
I really like that as well. I think that sits with a lot of what we're talking about at Pink Elephant. This is not just even a women's health issue. This is a societal issue. It's for everyone. Everyone needs to understand how to provide validation, empathy and connection.
Recognizing Partner Grief
00:23:14
Speaker
Those three things are really important to someone who's experiencing a miscarriage or a pregnancy loss.
00:23:19
Speaker
no matter what the gestation, no matter whether you've been through it or not been through it, you need to understand how to have these conversations. And yes, they might be difficult and hard to lean into, but that doesn't mean that we should shy away from them because you perpetuate the silence then. Terry, I'd love your thoughts on what people can say to offer that kind of support. There are some tangible things people can say and do. I think the most powerful things you can do is acknowledge and validate. I'm sorry for your ask.
00:23:47
Speaker
Open up an open conversation. Do you want to talk to me about that? And not feel, and I think this is where going to a traditional therapist for support becomes an issue for people. Not trying to feel like you have to fix this. Don't have to fix it. There is nothing to fix it. I'll often say to people, and even though I've experienced this, I don't know what to say to you at the moment. There is nothing that I can say and nothing that I can do right now.
00:24:16
Speaker
that is going to fix this in any way shape or form and make this any better. It is, you know, my favorite phrase, it's a shit show. It's a shit show. Then I am just so very sorry that this is something that you are going through. I am so sorry that you have lost your baby and really acknowledging. And I think this link is important when it comes to talking about early pregnancy loss.
00:24:39
Speaker
It's not only the baby, it's those hopes and dreams. And when we talk about hopes and dreams, that's invasive to our lives. All of us have hopes and dreams, ways that we see the world, things that we are experiencing or expecting to happen. And I've got quite a type A personality. So for me, the most difficult thing when I was going through losses, if I put in X, I like to pull out Y. Well, I was putting in X, Y, and Z, and I was pulling out A.
00:25:05
Speaker
And I could not cope no matter what I did, the hopelessness, the out of control. And I think really acknowledging that for people, you know, whether we're friends, whether we're a therapist, whether we are a healthcare professional, this must be so hard to you. You must feel so out of control. You know, when a baby dies inside us, that's like you're living with the scene of the crime. You know, this has happened in your body, in your uterus.
00:25:31
Speaker
It's invaded your heart. It is. It's all consuming. And just having that acknowledgement that this has happened, you know, for you, and then really understanding the impact on the partner. So, you know, this has happened. And I always say to women, this has happened to both of you. You've both lost your hopes and your dreams and your baby.
00:25:51
Speaker
But when it happens inside a woman's body, it has a biological component to that dose that is just absolutely monumentally enormous. And I think that's where health professionals need to come in, not just sorting out the medical management of what has happened, but really understanding the biophysical, how our emotions are connected systematically to our body and really being able to validate
00:26:18
Speaker
empathise and just hold a space for somebody even if they're going through the hospital system to be what they need to be in that one. I love that. Can you talk to us a little bit about what the risks are so that if we don't meet people either as a healthcare professional or as a friend, a loved one, or even a workplace, if we don't meet women continually with the validation, empathy, understanding that they deserve,
00:26:46
Speaker
We've seen now from research that there is strong links to poor mental health outcomes. Can
Mental Health and Miscarriage Support
00:26:52
Speaker
you talk from your lens as a social worker about that? It's interesting, Sam, because I think a lot of times miscarriage, we don't acknowledge the trauma that women might experience in miscarriage. However that's managed, whether that is a natural miscarriage and what that might look like,
00:27:09
Speaker
you know, in terms of blood loss and what that might look like, or if it's going through theatres for a DNC, you go in with the baby, you come out with an empty uterus. And I think that the trauma associated with the loss is very minimised.
00:27:26
Speaker
for miscarriage. And so yes, we know that anxiety, especially if you're still trying to have a baby, the anxiety that can come through with a subsequent pregnancy, so a pregnancy after loss is just next level.
00:27:41
Speaker
But I think we are going to have a society of women experiencing PTSD, that complex trauma, where the support is not there in the first six months. If you're not getting what you need and having the space to process the experience that you've had, you're going to be sitting six months plus flats down the track with complex trauma. And that was really it for me. So it wasn't until I had my living baby, my third living baby,
00:28:10
Speaker
that I actually stopped and became non-frontal and what I had then was complex trauma that I had not dealt with while I was very busy trying to deal with the anxiety and the depression associated with the miscarriage and really had to then spend years in therapy working through that myself.
00:28:29
Speaker
So, it's an external, but an internal validation as well. You know, for the women who's experiencing it, to be able to stop and go, this is really bad and I need to sit with myself and give myself permission for feeling the way that I am now. With, of course, that broader societal, you know, validation, healthcare, professional, friends, family,
00:28:53
Speaker
It's such a big systemic change, but I'm so proud of pink elephants and so proud to be associated with them because for the first time, there is a space that works with women experiencing any pregnancy loss. At my proudest moment, so when I pull your resources and I hand them to patients and I go,
00:29:14
Speaker
Here you will be heard. Here, hop upon, look at the results and read the information, Facebook groups and peer support. And all of a sudden there is an organization filling the space specifically for women experiencing early pregnancy loss. And so for me, when I see patients that are experiencing early pregnancy loss in the education I give to our e-pass clinics,
00:29:39
Speaker
I'm just busy educating recovery staff. They wanted to know, what do we say to someone when they come out of theatre, you know, and they've had a D&C? What do I say? I hand a box of tissues. No, you don't bloody hand a box of tissues. You say, I'm sorry for your love. So, you know, I'm noticing that you're crying. Do you want to talk about it?
00:29:58
Speaker
or the e-passes and just being able to say to people, this is how you do it. This is how you respond in the first instance, because you won't forget that, just like your hubby didn't forget.
00:30:12
Speaker
The test tube, he also wouldn't have forgotten if somebody just stopped and actually validated what this might be like. Not only for you, Sam, because you're the patient and what you were going through, but for him as well. So really recognizing that it's invasive. Yes, it's an added element for women because of the biological. But beyond that, for the family, whether you're a same-sex couple or
00:30:36
Speaker
or your partner, whatever it takes now, really understanding that this has impacted them too. Yeah, 100%. We know that in our online communities, when women share stories, yes, they share the ways that they're not met in the way they should be, and they're awful. But we also see beautiful messages of hope and also really, really nice messages in those communities about doctors that are doing a really good job.
00:31:03
Speaker
And that should be noted as well because we're not saying everyone's doing this terribly. There are some incredible health care professionals like yourselves who are in this space, both of you, and making a difference. And they are complemented constantly by women because, unfortunately, they'll go through this whole experience and they'll go through quite a lot of different health care professionals because it's not managed by just one.
00:31:23
Speaker
and they'll have probably five really crappy, awful, not positive experiences, and then they'll have that one person who's that beacon of hope, and it's almost like wanting to completely switch that round, right? But they'll remember that person that does give them the support that they deserve, so you're completely right there as well.
00:31:43
Speaker
People don't talk about it, but it's happening behind closed doors, hidden behind smiling faces. There are so many people suffering in silence right now, unable to access the support that they need and deserve, simply because they don't even know that there is support available.
00:32:07
Speaker
The pink elephants community is made up of people from all over Australia. Some come from the big smoke, others from the bush. Some of us have heaps of friends and family around. Others have none. Some have lost babies at five weeks. Some had ectopic pregnancies.
00:32:29
Speaker
Some had multiple ultrasounds. Others only ever saw the two red lines on a positive pregnancy test. But we all have something in common. We have all lost a baby. We are all bereaved parents.
00:32:48
Speaker
There are estimated to be over 100,000 of us across Australia every single year. Please help us connect with these people to give them the support that they deserve. No one should have to lose a baby and be left on their own to navigate their grief. Help Pink Elephant support more bereaved parents. Visit pinkelephants.org.au
00:33:19
Speaker
We've spoken a little bit about the acknowledgement. We've spoken about some of the tips of ideas of presenting, supporting, observing, being. But how do we start the process of acknowledging a partner's grief if their grief is in a different stage of yours?
00:33:41
Speaker
So as we understand, as people that have experienced this, you'll have those moments where you'll be like, okay, well today, I actually feel like I'm having a better day today than yesterday. And then hubby comes home and he's just had a real shit one. And then there's this resentment or there's this kind of process that you go off. I don't want it. This is my one pocket. It's probably going to be crappy again tomorrow.
00:34:07
Speaker
I mean, the complexities of grief within a relationship is something that I feel like is quite unique and I really would love to get your take on. Yeah. Where do you start? Yeah.
00:34:20
Speaker
So it began for me. It's a lot of psycho education. So when I'm working with a couple, you know, who have experienced a loss, one of my favorite things to do is to educate them on gendered grief and really talk to them about the way that, you know, you have the intuitive or the, you know,
00:34:40
Speaker
I always forget this with the intuitive or instrumental style of grieving and I talk to them about the gendered nature of that and communication and it's so interesting because one of the examples that I use when I work with couples is what you just said.
00:34:57
Speaker
I'm sorry Stacey, it's like you've had a really good day, he comes home, he's had a shit of the day, you see it or he shares that with you and it's kind of you know talking to the partner about their relationship, the bigger picture of their relationship and the communication and really finding a way when you actually can both feel that you can share because what we hear more of is
00:35:23
Speaker
this resentment and anger towards the partner who seems to have moved along quite nicely from the experience whilst you know it's often the woman who's left really floundering and struggling with what's happened for her body and to her body and so I think in the whole perinatal pregnancy loss space the continuum from you know an ectopic pregnancy or a
00:35:48
Speaker
chemical pregnancy all the way up to, you know, the loss of a living child is really the psychoeducation around reading styles and permission. And I often say to couples for the most part, I see a beautiful yin and yang and to think of it like that. So when one of you has more to be able to give, the other thinks about it as something that they're going to take.
00:36:11
Speaker
and that we will see this natural pendulum swing between the two of you. So really just talking to that, allowing that open communication rather than that resentment around he's bringing it, I can't deal with it, or she's bringing it, I can't deal with it.
00:36:28
Speaker
to really allowing the relationship to open to receive from those parties what they need. And I think, you know, we talk about the experience of pregnancy loss or baby loss really impacting relationships. Some people talk how it brought their relationship closer. Others will, you know, relationships end and we see that as well. And I think a lot of it comes down to this.
00:36:51
Speaker
You know, there's bigger conversation and this is a much bigger conversation.
Educating Society on Miscarriage Impact
00:36:55
Speaker
The whole, you know, digress, I guess, that really, again, education, not so passionate because I think most people in this world want to do the right thing. They want to do good. They want to be that supportive friend. They want to be that healthcare worker who's acknowledged for being amazing at what they do.
00:37:12
Speaker
but often we just don't know what that is. And so in the absence of doing the right thing, we do nothing and that often becomes the wrong thing. So really just education, education, education, putting it out there, de-stigmatizing it, throwing it open to the broader society and having that filter up through the healthcare system as well. I love that. And the psycho ed I think is
00:37:37
Speaker
It's just such an important tool because there's so much out of control you kind of immerse yourself in such medical stuff. I actually have been working with a couple and particularly a client that is working through the processing of male infertility and all of the gendered elements that come from that perspective.
00:37:56
Speaker
And I think the education behind the statistics of that and what that looks like to understand that, you know, just as you say, there is not a particular type of grief, there's not a particular type of way there's space for it all, but also there's not a particular type of infertility or conception or those types of things that may lead into these pregnancy loss spaces that then when you process the grief, there's a whole lot of other stuff that's there to be unpacked.
00:38:22
Speaker
So the cycle and educating yourself on the facts, not necessarily the societal conditioning is such a great point and a real, a nice kind of superpower to have when it doesn't feel like you have a lot of times.
00:38:40
Speaker
I think I'm going to know the answer, but we're going to ask. The miscarriage rebellion is about invoking empathy, sharing our stories on purpose, but ultimately to incite action. We for too long have not seen the change move quick enough.
00:38:55
Speaker
We no longer want to sit back and accept the status quo. Women and their partners and their extended families deserve so, so much more. With the power of your lived experience and all of the work that you've done in the last, like you said, 15 to 20 years, what would be the one thing that you would change? What would you make happen today if you could make anything happen? That's a big question, Sarah.
00:39:21
Speaker
I'd love to weigh the magic wand where no woman had to experience any sort of loss of the pregnancy or a child but in the absence of doing that to really just wank up with the society that acknowledges the lived experience of pregnancy loss as something to be validated. I think that
00:39:44
Speaker
We are superheroes to get through pregnancy loss and to get up and to exist each and every day no matter what we're doing in our lives. And just to have it recognized, not pathologized, but just as something that happens to people that deserve, just wrap them up in love and support and validation of what this is like for them. And I guess that would be what I would want.
00:40:17
Speaker
I love that. I love the fact that validation and wrap them up in love and support. Yeah. The difference it can make, it sounds simple, right? But the difference it can make is profound.
00:40:29
Speaker
I want to start by just reading out what Terry said because I think it's incredibly strong and really needs to be heard. So any joy or love or enjoyment of my other two children, I was lucky enough to have two living children, was completely overshadowed by the losses that I was experiencing and the impact that they had in my life.
00:40:53
Speaker
I show that so intentionally because it is sadly something that we've seen so often within our own online communities and what women tell us about their experience of this secondary infertility. Those women that do have first pregnancies that go fairly well and have living children and are blessed in that way and know that they are, but then face incredible experiences and journeys of loss and fertility.
00:41:18
Speaker
That's massive, but often they're met with, well, at least you already have a child. Why are you even trying again? You should just be grateful for what you have. I know personally that was my story too. I feel like it's an important part to unpack for listening. Even women that have both had losses can actually compare each other's worthiness in inverted commas because I'm on a podcast. But this worthiness of grief, whether you have a child or don't have a child,
00:41:45
Speaker
I'd love your take on that as well from a therapist perspective. Yeah, I feel that secondary infertility really continues to really, I guess, build on that isolation. So we're already finding that the research shows us that the isolation that women who go through pregnancy loss is, I don't know what the number is at the top of my head, but it's big. It's one of the biggest
00:42:08
Speaker
factors in the mental health, I guess, unraveling around this experience. And when we're talking secondary infertility, there's this other level of isolation that happens because there's this onset of isolation from shame. So when we start to feel pain, we're starting to feel grief, we're moving through those processes with a child that is in our arms at home in our house.
00:42:34
Speaker
then we are really naturally starting to feel the shame about the feelings that we have and what then happens from that is that we find ourselves isolating even further not just from our pain but from sharing our pain that could even be with your own medical professional your therapist.
00:42:51
Speaker
your friends, your partner, because there is such a guilt that happens around this feeling when we have a child already. Particularly for those people that may have also had infertility moving into the first child, it's almost like this extra prize. You know, I will lie, at least I got this.
00:43:11
Speaker
And then there's the other option of people that also never had that infertility and are getting this in a second time. It's just either way you look at it, it goes deep and complex. So from that shame, it moves into that isolation, which can then really move into disenfranchised grief. So grief that we're now starting to disassociate with.
00:43:32
Speaker
And the isolation and the depth of that without being tended to a very very serious and in other episodes we have unpacked the true definition of PTSD but one of the other ways that PTSD can show up is in the personalization so you begin to really find yourself
00:43:54
Speaker
disattaching from your life, moving further and further from the reality. So that might be numbing out, that might be avoiding, that might be pretending. And so not only is this isolation quite extreme, but now we're actually not acknowledging our existence, you know? And so that can really move into more serious anxiety, like a deeper depression. It can move into this kind of attachment disorder.
00:44:20
Speaker
And then also intimacy a lack of intimacy and loss of intimacy with our children ourselves and our partner. So once we start to get to that point it is a real you know it's a real serious issue and we need to be very aware of it and ensure that we as a community are looking at this in real with really different lens with a really different lens.
00:44:42
Speaker
I remember I used to say to people, and it was almost like myself justifying it, but I used to say, it's because of her, it's because of who she is as a child that makes me want to have more children, in some ways makes the loss of another baby harder for me because of that.
00:45:01
Speaker
And then i look back now and i got me trying to justify it outwards outwardly and it's the advocacy of others when they meet you and you're not sure how to kind of meet them back with a response and you're managing bad.
00:45:13
Speaker
that lack of knowledge and awareness in this area as well. And then you end up almost trying to justify everything and you shouldn't have to. You should never have to justify the number of children that you want in your family, that you're trying to build, that you have a future in your heart and your mind of what you're trying to create. And I feel like that's something that is definitely a false narrative that absolutely needs to be addressed. This thing that if you have a child, then therefore any future losses don't hurt as much. And it's okay. Cause you've got a child. Cause that is not what we see at all. No.
00:45:43
Speaker
And we really have to watch how we acknowledge our experience regardless of if we're comfortable with it, regardless if external factors tell us it doesn't deem an appropriate reaction, it doesn't deem an appropriate response. Whatever is coming to us, it's a really important thing to consider of how we're acknowledging what is.
00:46:04
Speaker
And what is, is exactly how you're feeling. There is no ifs or buts about it and if that is a challenge and that is a really difficult thing for you to navigate on your own, then I encourage you to seek support because this is something that absolutely merits the full brunt of support here just like any other experience.
00:46:27
Speaker
Yeah it's a funny one and it definitely hit time for me to i think the thing that's quite personal is also this idea around. Who you are as a person who are as a mother you know there's this other experience that you're going through that's completely and that you're immersed in and then also as terry mentioned taking away the actual original idea of mothering and parenting as well so there's a many many layers it's very complex.
00:46:54
Speaker
Yeah, it really is. And if you are listening today and it's something that you identify with, there are many of our peer support companions that have this experience of secondary infertility. They can offer you peer support, then there's all of our other support, there's counseling support services. It is something that is very, very worthy of support if you need it. Everything will be linked to, as always, in the show notes.
00:47:15
Speaker
Today's episode may have brought up some feelings for you that you need some support around. That's totally okay. Head to pinkelephants.org.au to find access to our circle of support, your safe space where you can be met with empathy and understanding throughout all of your experiences of early pregnancy loss. We're here for you. You are not alone. If you enjoyed listening to the miscarriage rebellion, please help us by leaving a five star review wherever you listen to podcasts.
00:47:46
Speaker
The Miscarriage Rebellion is a Pink Elephants podcast produced by our friends at 3P Studio.