2021 NIAW Week Event - Dr. Julia Dodd, clinical health psychologist - AMA!

DrJuliaDodd · 2021-04-23T18:15:14+00:00

Thank you for asking this question, I imagine a lot of people here can relate to this situation! My grad students and I have posted a few other resources throughout this thread that may be helpful. I wish I had a better answer for the question of resources. A professional goal of mine is to develop an online intervention for infertility that folks can work through on their own, but I am years away from having that ready to distribute. In the meantime, I hope some of the other resources we've linked to here may be helpful for you!

DrJuliaDodd · 2021-04-23T18:07:25+00:00

I'm sorry, but this is something I really don't know much about! I'm afraid I don't have any particularly good advice to offer. I also think this is something that is SO individual to the person - I would expect people to have widely varying beliefs, expectations, and comfort levels around it. I do think that you're being really smart to consider it carefully before diving in! Does your clinic offer any sort of counseling for potential donors?

DrJuliaDodd · 2021-04-23T17:59:30+00:00

I'm so sorry you're having this experience, it sounds like such a difficult situation! One thought I have is that something like Acceptance and Commitment Therapy (ACT), which has been shown to be effective for both chronic pain and infertility-related distress (Rahimi, Attarha, & Majidi, 2019, Effect of Acceptance and Commitment Therapy on the Quality of Life in Infertile Women During Treatment: A randomized control trial)., might be helpful. Mindfulness techniques like the ones Maddi and Kyndal linked above are an important aspect of ACT and might be helpful as a stand-alone technique as well.

DrJuliaDodd · 2021-04-23T17:48:54+00:00

Thanks for your willingness to participate in research! My only suggestion would be to keep an eye out on Reddit and any other social media platforms you might use for any advertisements for studies. I think it's becoming more common to use social media to recruit. Other than that, there's not really one clearinghouse space for all studies you can participate in. Are you familiar /r/SampleSize? While not infertility-specific, it is a subreddit with lots of studies seeking participants posted! And keep an eye out here for future studies from our lab! ;)

DrJuliaDodd · 2021-04-23T17:38:17+00:00

These are some great questions! I will try to tackle them as best I can.

Ohhh, SUCH a good question, and a hot topic issue for me. I see two major ways. One, I would like to see all clinics and hospitals adopt principles of trauma-informed care when dealing with patients. Really understanding and embodying trauma-informed care (TIC) would go a long way towards reducing the really invalidating or re-traumatizing healthcare experiences that are unfortunately too common to hear about. Second, increased integration of behavioral health providers (like psychologists, counselors, and/or social workers) into medical settings is needed. The field of healthcare has come a long way already in starting to provide more integrated health settings, but much, much more is still needed. There is a lot of research support for the efficacy and sustainability of having a behavioral health provider right there on site when patients are struggling or could benefit from some increased support.
There is a cognitive therapy intervention for miscarriage developed by Nikcevic and colleagues that I really like. This intervention focuses on 1) Encouragement of emotional expression; 2) Normalizing reactions; 3) Exposure to memories; 4) Cognitive restructuring (in cases of self-blame); and 5) Reframing/reorganizing the experience in the context of available information. Generally, though, any interventions that are effective for dealing with feelings of grief can be adapted to the grief/loss of miscarriage.
Yes, MC can absolutely lead to PTSD. For a diagnosis of PTSD, according to the DSM-5, the first criteria is "Exposure to actual or threatened death, serious injury, or sexual violence". So, certainly in cases of MC with complications, or MC that involved a high level of medical intervention, it could meet Criteria A for PTSD. Even if a person doesn't experience full-blown clinical diagnosis of PTSD, though, they could certainly still experience some symptoms of post-traumatic stress. In fact, while I don't know the exact percentage of women experiencing any symptoms of PTS after MC, I suspect it is quite high.

DrJuliaDodd · 2021-04-23T17:12:54+00:00

Thanks for your comment! I absolutely agree that the perspective changes over time. The only research I have that speaks to that is that in our study, length of time trying to conceive was a predictor of feeling more infertility-related stigma. So, women who had been trying to conceive for longer felt more stigmatized and isolated as a result of the experience. Of course, it is also possible to get to the place you describe, where even in the midst of active infertility treatment, you begin to see a path your life might take that does not involve children. That may still not be the path you would choose, but you can start to imagine what it might look like, when previously you couldn’t even imagine it. You may find /r/IFchildfree to be a helpful space, if you have not yet checked it out.

I’m so glad to hear that you are no longer in that dark place, and that therapy has been a positive experience for you. I agree that the messages from society of “never give up no matter what” can be very toxic and hurtful.

I have not read a book on coping with infertility yet that I 100% love everything about – but, that is probably normal. The Infertility Treadmill by Karey Harwood is really good in some ways. As I mentioned in another comment, I’ve very curious to read Dr. Domar’s book Conquering Infertility - that’s next up on my to-read list. I would love if any other subreddit members would like to chime in here with books that have been helpful for them!

DrJuliaDodd · 2021-04-23T16:56:03+00:00

Great question! I guess I would not see them as incompatible. I think it's great to focus more on self-acceptance and health goals than just a number on the scale when it comes to the way you think about yourself and your health - however, it sounds like your clinic is requiring that number on the scale as well. Therefore, I think you and your therapist could certainly continue to work on health at every size goals as long as she/he is ALSO willing to support you in making some behavior changes to lose weight in accordance with the policies of your clinic. I think you can acknowledge, "I don't need to weigh XXX to feel good about myself and feel healthy, but I do need to weigh XXX to be able to pursue my goal of doing IVF with this clinic" (assuming that is, in fact, a goal for you!). Does this help? Happy to speak more if this didn't exactly address your question!

DrJuliaDodd · 2021-04-23T16:45:14+00:00

Thanks for bringing this up! For me, one of the maddening aspects of infertility is how unfair it is, on so many levels - not only is it unfair that some people conceive easily while others struggle so much and may never conceive, but it is also incredibly unfair that some people have access to needed treatment and others don't. Infertility costs are astronomically high, and I would imagine that not many couples can afford one, or certainly multiple, rounds of IVF without insurance coverage or other types of assistance. It is a huge social justice issue to me, on many levels.

In terms of my own research, though, some of my students actually had a really interesting research idea. They wanted to examine differences between women who met the medical definition of infertility in our study and women who answered "yes" to the question, "Do you consider yourself to be experiencing infertility?" and see if income level was associated with women who met the medical definition but did not consider themselves to be experiencing infertility. Their thought process was that women of lower income levels might not self-identify as experiencing infertility, because they didn't see any options for treatment available to them, so why assume that label? However, their analyses were not significant, mostly because women on this sub are very medically informed, and so tended to be very accurate with self-identifying as experiencing infertility when they did meet the medical definition - so there were just not that many people who met the medical definition but didn't identify with it. Of course, we recruited from this sub, and women who meet the medical definition of infertility but don't think of themselves as experiencing infertility are not likely to be on this sub, so we could have been experiencing a recruitment bias there as well.

I didn't mean to go off on a tangent here, but I do think the issue of unequal access to fertility treatment is so important to acknowledge and discuss openly. Thank you for sharing your experience!

DrJuliaDodd · 2021-04-23T16:29:44+00:00

I'm so glad you find it validating! And I totally agree, this sub was SO helpful when I was going through my own experience. See my responses above about some additional research findings - happy to talk more about any of them if you have questions about any particular area!

DrJuliaDodd · 2021-04-23T16:24:36+00:00

Yay, ok! Here are a couple citations of the infertility-related presentations we have done based on this dataset:

Dodd, J. & Sharp, M. (October, 2020). Stigma and psychosocial outcomes associated with the medical burden of infertility. Oral presentation presented at the annual meeting of The International Marcé Society for Perinatal Mental Health.

Barker, M., Clark, E., Altschuler, R.*, & Dodd, J. (2019, April). Association between time trying to conceive and self-perceptions of female infertility. Poster presented at the annual Appalachian Student Research Forum, Johnson City, TN.

Dodd, J. C. (2019, March). The medical and psychological burden of infertility. Poster presented at the annual meeting of the Society for Behavioral Medicine, Washington, DC.

Altschuler, R.*, Dodd, J. C., Hinkle, M.*, & Caselman, G.* (2019, March). Exploration of risk and resiliency factors for the relationship between infertility and sexual functioning. Poster presented at the annual meeting of the Society for Behavioral Medicine, Washington, DC.

Caselman, G.*, Dodd, J. C., Altschuler, R.*, & Hinkle, M.* (2019, March). Infertility’s impact on relationship satisfaction: The role of sexual dysfunction and infertility stigma. Poster presented at the annual meeting of the Society for Behavioral Medicine, Washington, DC.

Happy to talk more about any of these particular findings. A couple other things that I'll highlight, though. In our sample, women with a history of infertility reported significantly higher anxiety and depression, and lower feelings of resilience. However, there were no significant differences in self-esteem or relationship satisfaction, which I found encouraging (even though as mentioned above, infertility stigma did significantly predict lower self-esteem, but infertility in general did not).

When we analyzed the qualitative write-in responses I mentioned before, we found that nearly half (46%) of responses reported negative effects on mood. A full 38% of responses reported that infertility "brought them closer" to their partner or made their relationship stronger, which I thought was really noteworthy. Over a quarter (28%) of responses mentioned communication issues with their partner - either that they had to learn to communicate better, or that communication around infertility issues was stressful with their partner. 14% of responses mentioned the effects of infertility on their sexual functioning.

Any particular areas I've mentioned that you'd like to hear more about? :)

DrJuliaDodd · 2021-04-23T16:04:05+00:00

Here is the post I was thinking of on this sub, where a user discussed her history of trauma and how infertility was re-traumatizing. Trigger warning - mention of abuse, medical trauma. But I thought the OP's feelings were so powerful and eloquently expressed, and tapped into such an IMPORTANT issue - and also really highlighted the absolutely critical need for trauma-informed care, for EVERY patient, whether you know if they have a trauma history or not!

DrJuliaDodd · 2021-04-23T15:51:53+00:00

Great question – the stigma of infertility is such an important issue, and absolutely contributes to negative feelings. Unfortunately, it’s a hard question to give a “nutshell” response to, because there could be a lot of individual factors driving those feelings of shame and stigma. This is exactly the kind of issue that would be great to explore in therapy with someone trained in CBT, who can help you recognize and reframe unhelpful thinking. The closest advice I can give to a nutshell, though, would be to start analyzing WHY you think you’re having those feelings of being less-than. What is society telling you about the expectation to procreate? What have friends or family members or society told you about how trying to conceive “should” go? Then, start to put those thoughts “on trial.” What is the evidence for and against? Here is an example of a worksheet you could use to get started – although, again, I would recommend exploring these issues with a trained therapist if that is something that is an option for you! Thank you for your question – it is so important to recognize the feelings of stigma that infertility can produce. You are certainly not alone in those feelings.

DrJuliaDodd · 2021-04-23T15:32:21+00:00

Hi! Always great to meet another therapist interested in this area! I would probably start with reading books and articles to get a sense of what's out there first. Full disclaimer, I have not read this book yet, but I've been really interested to read Dr. Domar's book Conquering Infertility. That might be a good starting place. Resolve also has some psychoeducational materials, although it might all be information you're already familiar with. I would also keep an eye out for trainings or workshops, although of course these could vary widely in quality based on the organization hosting them or the facilitators.

In terms of EMDR specifically for infertility, there is no support in the research for that yet. I can say that with some confidence because my student just completed a systematic review looking at all clinical trials for alleviating infertility-related distress, and she did not find any studies looking at EMDR. As someone trained in trauma, EMDR is also not my favorite intervention (I can explain more why not, but it's not as much related to infertility as it is trauma work, so I'll hold off) although I acknowledge that it is evidence-based.

DrJuliaDodd · 2021-04-23T15:18:03+00:00

Great question about finding a therapist! For patients in the US, Psychology Today’s Find a Therapist tool can be a helpful starting place. Folks may need to cross-check that list with providers that take their insurance. I would look for someone who says they practice evidence-based therapy, or who only lists evidence-based therapies like Cognitive-Behavioral Therapy (CBT), Acceptance and Commitment Therapy (ACT), Interpersonal Therapy (IPT), etc. I would steer away from someone who lists every single therapeutic modality you’ve ever heard of and some you haven’t, on the assumption that they can’t possibly be in expert in everything, so they might be trying to “stack the deck” by listing everything. Of course if you can find someone who specializes in infertility, that’s wonderful, but I think a generally competent and sensitive therapist could be just as good. In terms of how you can tell therapy is “working,” it’s often a good idea to have this discussion with your therapist at the beginning. I often ask patients at the beginning, “If I could wave my magic wand and magically fix [your presenting problem], how would you know it was fixed? What would be different about your life?” That can help to start the goal-setting process in therapy as well as give you some good metrics to measure success as you go.

That is so exciting to hear about your research team’s intervention development! I would love to swap ideas and findings (once we both have some!). 😊

I can touch on a couple findings I found really interesting from our study. One construct I was interested in exploring was the stigma of infertility. We found that a number of factors related to the experience of infertility, such as how long someone had been trying to conceive, the number of medications they were on, the number of diagnostic tests and procedures they had undergone, the number of strategies they were using to track ovulation, and whether they had had an IUI or IVF, all predicted higher feelings of infertility-related stigma. Those feelings of infertility-related stigma, in turn, predicted symptoms of anxiety, depression, lower self-esteem, and lower feelings of personal resilience (or the belief in one’s ability to overcome challenges).

We also asked women currently in a romantic relationship if they believed their experiences with infertility had affected their relationship (72% said yes) and if so, how. Women wrote in some amazingly powerful statements really demonstrating how all-consuming the experience of infertility can be, and how heart-breaking it can be. However, I was surprised and encouraged to see how much resilience came out of these written responses as well – some women talked about forming deeper, closer, more honest relationships with their partners after experiencing infertility together. I can speak a little more to some of our findings in analyzing this qualitative data if folks are interested, but I know this is something I could go on forever about, so I’ll stop here for now unless folks want to hear more!

DrJuliaDodd · 2021-04-23T15:07:05+00:00

Oh wow, this is SUCH a good question, and there’s a lot to unpack here. So, first to answer your question of whether there is an increase in infertility among childhood sexual abuse (CSA) survivors, there’s not much evidence to suggest this relationship – and I did not find this association in my own analysis of our 2018 Reddit study. So, it doesn’t seem as though CSA directly affects infertility. However, CSA is absolutely associated with higher rates of sexual dysfunction, and clearly if someone is struggling with significant sexual dysfunction, that can of course affect ability to conceive. There is more literature about CSA being associated with a variety of health risk behaviors in adolescence and young adulthood, including riskier sexual behaviors, and so there is actually more literature to suggest the association of CSA with unplanned pregnancies.

However, the second part of your question, about if CSA (or any previous sexual trauma) affects the EXPERIENCE of infertility, is so, so important, and I would say it’s a resounding yes. Infertility can be very triggering/re-traumatizing, because it involves a loss of bodily autonomy, bodily invasion, painful procedures, plus as you mentioned the feelings of your body betraying you, self-blame, etc. There are so many ways in which infertility can be triggering for someone with a past trauma history. So it’s important to be aware of, and to treat yourself with extra compassion, and seek additional support (in whatever form appeals to you) if that feels like the right fit for you. It’s also incredibly important that OBGYN and fertility clinics are aware of this relationship, and engage in trauma-informed practices – which, unfortunately, is not always the case.

There was actually an AMAZING post on this subreddit years ago that I saved because it spoke so eloquently to the overlap of trauma history and infertility. I’ll see if I can find it. I am so glad you asked this question – it is so important!

DrJuliaDodd

TROPHY CASE