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MS Plus Executive Manager and Nurse Practitioner, Jodi Haartsen discusses the stigmatisation of women’s health issues, and the barriers women face to accessing and receiving quality care. Jodi also examines the future of women’s and girls’ health and how this will impact how we think of women’s health needs in MS.

MS Plus acknowledges the traditional owners of the land this podcast has been recorded on, the Wurundjeri people of the Kulin Nation. We pay our respects to their elders past, present, and emerging.   

Jess: Hi, I'm Jess, the Health Promotion and Wellbeing Coordinator with MS Plus. Welcome to the Ms plus Education podcast. Jodi Haartsen is the executive manager of client engagement and wellbeing at MS Plus. She is a registered nurse and MS nurse practitioner with over 20 years' experience working with people affected by MS.

She's our guest today discussing some important issues regarding women's health, specifically women living with MS, and the additional barriers that they may face when accessing healthcare.

 Jodi: Thanks, Jess. As part of International Women's Day, earlier this year I had the privilege of attending the Victorian Governor's lecture series, which was titled ‘A Healthy Future for Girls and Women at Government House’. Her Excellency, the Honourable Linda Dessau, started the event by reminding me just how far we've come in discussing women's health issues by highlighting the fact that the words vaginal prolapse, incontinence, endometriosis, and menopause were probably things that had been said very few times over in Government House, so it was just great to hear Her Excellency open it, to just reinforce that women's health issues were top of the agenda and were continuing to be discussed.

As the presentations went on, we had a number of key speakers that really focused on some of the key issues for women across all of Australia who are facing in terms of access to women's health. But what really struck me at the time when I was attending that was just how those issues were the same but amplified, and the barriers were even more significant for women living with MS.

For instance, the first lecture was given by Professor Marie-Paule Austin. She's the head of psychiatry at Royal Women's Hospital, and she pioneered the screening of depression and anxiety in the perinatal clinic, and talked about how that was most common in women who were 20, who were in their thirties, but it really didn't present itself, obviously, and that pre-screening was really effective. And I thought then about the huge issues of the prevalence of mental health issues in women with MS.

The second speaker was Dr. Tanaka Dune and she was a pelvic floor expert, academic, surgeon and educator. She had such an amazing energy. She was very dynamic in the research space. She really talked about the stigma and the stigma of talking about, vaginal prolapse was her thing, and the stigma of discussing those, and again, I thought, yes, there it's even more complicated in people living with MS as well. She was really interesting too.

And the last speaker was Associate Professor Michelle Peate, and she was a fertility and reproductive health expert. And I know that that's something in my years of clinical experience that we didn't really talk a lot about and there's still a lot of dismissiveness about fertility in MS, and getting pregnant. And it was just like, “Oh, just wait and see. Keep trying.” It was really quite dismissed, and she talked about how there were improved choices and outcomes, and she was working on decision aids to help people through the journey of fertility. And I thought, we've got some work to do in the MS space when I was listening to that.

Jess: Absolutely. You spoke a little bit about one of the presenters saying some of those words weren't even mentioned years ago, like just normal body parts. Do you think this really ties into the stigmatization of women's health issues and, has become a real barrier, even more so for women living with MS?

Jodi: Yes, I really think that using that terminology, that discussion, it was so taboo and when I started nursing a long time ago, but when I started MS nursing 20 years ago, they're just not discussions that you had. And often, I worked with mostly male neurologists and so, there weren't discussions about that kind of, could there be a vaginal prolapse, you know, those sorts of things. I think that that stigmatization was a huge barrier, the fact that there were male neurologists was a huge barrier as well.

And if we look across at other conditions and other diseases, it's the same story as well, women with heart disease, for instance. Women are diagnosed with heart disease seven to nine years later than men and it's only now that we're discovering that women are presenting with different symptoms with heart condition.

And I often say, if MS was a men's disease there was probably things that they would've fixed a lot earlier than what they have now. But women are, in fact, four times more likely to die of heart disease and breast cancer and they're still only just beginning to recognize that women have different presentations than men with that.

So, I think that women's pain not being taken seriously, there's the stigma scale for chronic illness. Women traditionally have just, I guess it's that silence. and it was so great to hear those words spoken in Government House, that they were on a political agenda. And it made me realize the importance of putting it on an MS agenda, that we start to have those open conversations.

Jess: I think that's such a good point. You say the silence of women's health issues because you were talking about fertility, and it's sort of being dismissed, and I think I've spoken to a lot of women with MS feeling quite ashamed or embarrassed to raise an issue. But then often when they do, being dismissed as not a concern or not something to be looked into. Do you think that what are some of the other impacts on women with MS and the other sort of additional barriers that they might face when accessing healthcare?

Jodi: I think there are lots of barriers, not just related to the sense of this sense of shame, the sense of not being able to openly discuss them. Just that whole barrier of, I don't talk about my boobs to the neurologist, I don't talk about all those things, and you know there are other people to talk to about those too.

I acknowledge that, but there's basic barriers to access, such as women living with disability in terms of just getting to and from the clinics, just having that discussion when there's other people in the room. If you have to have your partner with you, that you're not comfortable in discussing vaginal atrophy is a really important one. You know, you're not likely to talk about those, and even cost, cost to priorities, and it's one thing that we don't talk a lot about in MS, but particularly now when we have really high costs of access to healthcare.

Sometimes people have to choose between seeing a neurologist or seeing a GP or seeing someone else, and the more appointments people accumulate, the more you sort of wish that you had one stop for everything, but you don't. And then there's just the general cost of transport. For those people who even live with a milder disability and who are still working, there's the cost of interrupting work for all those appointments.

Telehealth has certainly come a long way in being able to change that picture as well. But there's the physical barriers, the financial barriers, as well as the emotional and psychological barriers if people are experiencing anxiety or depression. That shame is amplified, and that experience is amplified. So I think, as you mentioned, there's lots of barriers to women accessing those services, mammograms is a really good example. It does take a bit of balance.

Jess: Absolutely.

Jodi: To get the boobs squashed it does take a bit of balance to get the boob squashed. It's also uncomfortable and again, it's that sense of, it's the safety that people feel, safety, psychological safety, but also the safety of being able to actually be in that space.

Jess: Absolutely. And do you think another barrier, because you actually mentioned vaginal atrophy, how many women would even know what that is?

Even knowing what health conditions to be talking to their doctors about? Or is this something that's normal? Because body parts, particularly female body parts, are so stigmatized and, it's sort of taught growing up to not talk about those things and it just continues on as people age.

Jodi: Oh, we were, weren't we, we were taught as women they just weren't open discussions. And it's still so hard to sometimes get those words out. It is just that sense, if you have a strong religious background as well, they were very taboo to talk about any of those things. To talk about vaginas and boobs and, all the things that go on, the body parts were just not something that were ever open. It wasn't safe to talk about those, and you weren't supposed to talk about those as well.

In all my years of experience with women in MS clinic, it was something that was awkward at the start. It was once you got to talking about it, but it was awkward to sort of ask that question, especially if it just came out of the blue.

Jess: So yes, that initial first step.

Jodi: Yes, that initial first step, like that ripped the bandaid off, and once you had that open door, that was such a, you could often see the relief, and it's a relief; you know when you go to the GP and they ask you about your pap smear, rather than you having to say, “I think I'm due for my pap smear.” It's an obvious one. They don't really talk about it very much, but it's such a relief when someone opens the door for you.

Jess: Yes. Do you think though, even when we're talking about women with MS, it can be different for young women versus older women? Because the research is sort of suggesting that things like being of a younger age can be a real factor to having more shame and sort of internalized stigma around having MS and whether young women face maybe, not more barriers, but maybe different barriers to accessing things around talking about bladder and bowel, things that maybe are seen as typically more older women's problems.

Jodi: Yes, absolutely, for sure. I think that's very much the diagnosis of MS impacts so many aspects of your identity and when you are young, sexuality and your identity are really intimately linked. That actually made me sound very ageist, but that, because it's very much that it's not an age thing as well, but it changes over time. Maturity gives you a certain sense of a different relationship.

And you are right, there's an expectation, there's a freedom in just saying, in some ways, for some people menopause in itself is liberating because you can actually say “it's menopause and now I can start talking about all those things.” And so, I think, people who are diagnosed young with MS are having different relationships, different sexual experiences, so again, older people as well, but it's a different look and feel and it's a different sense of what is safe to talk about and what can I be open to talking about.

Jess: Absolutely. And, when we are talking about those barriers, do you have some ideas around ways that we can overcome this issue, and why it's so important for women to connect to specialized healthcare?

Jodi: Yes. The Governor's series was really interesting in the way that the presenters and the lecturers talked about those barriers and the way that they approached the barriers. One of them was particularly building it into routine practice. You know, that was the screening for depression. It's part of what everybody does every day, to have those discussions. The other part of it was, the other presenter discussed how she just has those really open conversations about it. And she was so dynamic that I could really imagine her having those conversations that just, she was very much, “we need to keep talking about this, we need to keep open language”, as she really talked about her role as a doctor, and how she was promoting everyone having those languages. And she had podcasts and she had websites and she had that really kind of open energy.

So there were really different approaches to how to keep a conversation going. One thing I found was that, particularly with male neurologists, it can be and is the neurologist the right person to have these discussions with? And it doesn't have to be, but often with people with MS, they sort of stick with the one kind of specialist and some of the treatments for MS put you at more risk for some of the cancers. In MS there can be a very slight risk and you need to be more proactive in terms of monitoring for those. So, they are conversations that people have.

And one of the things I would encourage people to say, “I'd really like to see a women's health specialist, can you direct me to one?” And that was something that I did a lot in clinical practice. I used a lot of Jean Hailes Centre, and there was also Airlie women's clinic, in that's local in Victoria. But again, cost was a factor. And that was a big factor as well. A lot of those women's health specialists had a fee associated with that, so that was a barrier for some of the women as well. But that's sort of a good opening line, It's a very safe opening line. “I'd like to see a women's health specialist. Can we have that discussion?”

I also think peer support is, and sometimes it's just incidental peer support, but I was listening to a podcast with Jane Fonda about the importance of intentional women's relationships. And this is where you can be really intentional too, because a lot of the time, abnormal Pap smears, it is amazing how many women have had abnormal pap smears. And then when you get to your friend and say, I've had an abnormal pap smear, they're like, yes, I know about the vinegar. You know, I know what this experience is. And so I think, part of health is what you know, but part of health is also who you know.

And there's that great connection in women's groups where it's a safe place to open up and say, I think that I've got a bit of vaginal atrophy because sex doesn't feel like it used to be. And that person will say, me too. And this is how I feel, and being the brave woman, being the brave person, to be able to have that first conversation and open that door to that conversation in peer groups, even with your friends who will be able to refer that and intentionally seeking, who's my safe friend? Who's my safe friend who I can have this conversation with?

Jess: It's interesting you mentioned that sort of story because that all ties into women going through things in silence, and women's health being this really silent journey. But when women's health conditions are actually so common, even things that we're told are so common, like miscarriage, the number of women that will experience a miscarriage or loss is very common, but no one talks about these things, and I think that's really important to sort of open it up.

And you mentioned, talk to your neurologist. Is this where talking to your MS nurse could come into play? Because if you're a bit nervous about talking to your neurologist, could you do a soft launch through the MS nurse and how to bring these things up to your neurologist?

Jodi: Yes. I think that MS nurses are, they're not all women, but most are women, and nurses also have an openness and ability to deconstruct. Many nurses have an ability to deconstruct and be open and, again, I come back to that sense of a safe space, but it's so important when you're discussing these issues that people feel safe, and that they feel like the information that they give that they're open to you and they disclose to you. Nurses are often comfortable in having that conversation as well, often feel more comfortable in that space. So, I think, MS nurses are a great place to start, to open up, as well as we mentioned, peer support too.

And most neurologists are happy to talk about it. Although, you know, I've met quite a few awkward ones, and that's okay too because they may not be the right person to talk about this. They may not be the right person that you need. I guess they have an understanding of MS, which helps. You know, might be that the GP, and again, you can ask that, that question, “I'd like to speak to a women's health specialist. Who can you direct me to?”

Jess: I think it goes back to what you're saying, just being brave and having that conversation.

Jodi: Yes, absolutely. The bravery of the first person to be out there, to open the door, but what I really liked when I was listening to these other speakers was that more and more were removing those stigmas now, but it really struck me, like you said, there's still some things that are really stigmatized. There's still things that people don't even know what they are. Don't even know what vaginal atrophy is. What does that feel like? Women's sexuality, bowel, bladder, they're all impacted by MS. But very few people will go the next level and see if there's anything else going on. And a good continence clinic and a good continence nurse, if they're accessible to you, can be such a door. She's saying “It wasn't my MS after all, there's other stuff going on that we need to talk about.”

And you also mentioned miscarriage, and come back to that sort of fertility and miscarriage that can be something that, it again has not really spent a whole lot of time talking about, there's a lot of really good research going on about MS and fertility, but it's still something that there's a lot of scope for better understanding and better communications and better sense of, this is okay to talk about this.

Jess: Absolutely. It's an area I think, we've still got a long way to go, and I still know of people that've got doctor upstairs and doctor downstairs. But, just having that initial conversation and talking to people about what's going on with your health, is hopefully going to help with reducing some of the stigma and the isolation that these problems can cause for people.

Jodi: Yes, and I encouraged a lot of people who came into clinic. I really encourage them to seek out their expertise. And, when you hear speakers who are expert in their field, I think it's so important to access the right information and the right people to help you understand what's going on.

Pelvic floor physiotherapists are fantastic resource, and how often do we just box MS continence? You know, you are on Ditropan, as opposed to, there's so much more of a scope and those are also the people who will want to investigate what's more of an opportunity for you. And they're also accessible resources, often accessible for people, and not necessarily come at a cost as well.

And that's a bit about that networking with your peers to say, I know someone really good, or I know a great GP, or I know a good gynaecologist who also gets my MS. So that person sort of paved the way and been the brave one and said, I've discussed it. I'm there. I know.

I think abnormal pap smears are probably one of the most obvious examples of the relief. When people say, yes, I have had that too. You know, I've had that. I've had an abnormal mammogram. Oh yes, you have to do this, and you have to do that. And that's, oh yes, it's really uncomfortable. But asking, intentionally saying, okay, who's my safe friend who I can talk to about this? You never know what people are going to know.

Jess: Absolutely. No, that's really great. Would you have any takeaways from those series that you watched?

Jodi: I think my takeaway was that there are a lot of experts working in this space that you wouldn't normally be exposed to if you put all your eggs in the MS basket. My two kind of things that I think are really important for women living with MS in relation to women's health issues is to talk about it with your friends, your girlfriends, and, or peers who you incidentally connect with or deliberately connect with, through peer group progammes and such. And sometimes even when you're sitting in a clinic, you're probably not going to discuss your vaginal prolapse, but you can ask the next person, “Do you know any women's health specialists?”

There are lots of people out there who specialize in this, and if you put it all in your MS basket, you're probably missing out on some of the real expert care that you could be able to access. And so, reach out for that, and be brave enough to have the conversation.

Jodi: Absolutely. That's, that's really good. And I really like that. Just be brave and take the first step because you don't know who else you're helping, not just yourself. It could open up doors for other people in your life.

Jodi: Yes, and the more you talk about it, the more we understand. It would've been women who started talking about heart disease, and saying, “Hey, it's different and we need to understand this more.” And we need to understand women in MS differently as well.

Jess: Absolutely. Thank you so much for that, Jodi. That's been really great to talk about today.

Jodi: Thanks Jess.

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Published May 2023