Hosted by Erica Jolene | Transcription HERE

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Part Four of Telling the Atypical Truth: Disability Community-Building Through Podcasting. Reading from sections “Free of Judgment,” “Layered Lives,” and “Humans First, Labels Later.” Erica shares validating data, confirming that she was not alone with her feelings of social isolation. Using current research and scholarly work, she shares about feelings amongst caregivers and the importance of physicians not only validating the experiences of caregivers, but also encouraging them to seeks out resources as a valuable member of the team. Early episodes from Season One are referenced in this episode.

A caregiver's mission: finding our people and becoming an expert.

The strength and tenacity of my peer-parent-caregivers, it humbles me on the daily. When you combine our tireless motivation and our unconditional love with current research and medicine - that is an unstoppable force!

In today's episode, I share more about current research that details the benefits of medical professionals recognizing caregivers as being essential, if not critical, members of the care team as a whole. Enjoy today's clips from Season One, episode "Love Needs No Words," by my friend and fellow medical mom, Jenny Park.

Research conducted in relation to this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.

Links related to this episode:

Currie, G., & Szabo, J. (2020). Social isolation and exclusion: The parents’ experience of caring for children with rare neurodevelopmental disorders. International Journal of Qualitative Studies on Health and Well-Being, 15(1), 1-10.

Green, S. E. (2003). They are beautiful and they are ours: Swapping tales of mothering children with disabilities through interactive interviews. Journal of Loss and Trauma, 8(1), 1–13.

Rupert, D. J., Moultrie, R. R., Read, J. G., Amoozegar, J. B., Bornkessel, A. S., O’Donoghue, A. C., & Sullivan, H. W. (2014). Perceived healthcare provider reactions to patient and caregiver use of online health communities. Patient Education and Counseling, 96(3), 320–326.

Currie, G., & Szabo, J. (2018). “It is like a jungle gym, and everything is under construction”: The parent’s perspective of caring for a child with a rare disease. Child: Care, Health and Development, 45(1), 96–103.

Episode Transcription

Erica 00:15

Welcome to Atypical Truth. I am your host, Erica Jolene. I take seriously Walter Fischer’s contention that humans are storytelling beings. I created this podcast to amplify the stories of people in my community - the community of rare diseases, disabilities, and complex medical conditions.

Erica 00:37

Over the next few weeks, prior to the release of Season Two, I will be releasing some bonus episodes for you. From the top, I just want to say that these may not be everyone’s cup of tea. However, if you are a caregiver to, or an individual with a rare disease, disabilities, or complex medical conditions, you may find these episodes to be very comforting and informative - especially over the course of the next few episodes. I also feel that these episodes will be extremely relevant to any and all professionals who work with the community of people with disabilities - including my fellow disability-podcasting peers.

Erica 01:17

Throughout these bonus episodes, I do make reference to scholarly work and current research. I've provided links to these works and the thesis in the show notes.

Erica 01:30

Free of Judgment

Erica 01:34

I want to start by saying that I was incredibly fortunate to have landed the dream match of a thesis advisor when Dr. Sandy Pensoneau-Conway agreed to advise and really mentor me throughout this experience. She professor of communication studies who has a special interest in how we as a society, communicate about disabilities.

Erica 02:04

One of the first readings she sent to me was a powerful one by Dr. Sara E Green, titled, “They are Beautiful and They Are Ours: Swapping Tales of Mothering Children with Disabilities Through Interactive Interviews.” In this research which examined the narrative exchange through interactive interviews with mothers of disabled children, Green hit to the core an issue that may caregivers experience - where except among very close friends, many parents of children with disabilities often feel they need to “withhold or at least severely edit” their parental experiences when in social situations and conversations with other parents. With our experiences being unlike or atypical from the experiences of parents to non-disabled or medically fragile children; this often results in a reaction of sympathy, discomfort, or awkward silence. One listener respondent, who is also a personal caregiver, described the following, and I quote:

Erica 03:37

"I follow three mothers of medically complex children on Instagram. Through their honest stories, I have learned about the harm done by ableism, have had my compassion expanded by the sharing of their profound pain, and have learned new ways to understand my daughter and her situation. I have also seen these vulnerable women be shamed by uncaring and hateful comments. I better understand toxic positivity. I see these women trying to do their very best for their children, and by posting a portion of their hard lives, trying to make the world a better place for themselves and their children."

Erica 04:17

And I knew all too well what it felt like as a caregiver to be indirectly, but strictly monitored by society. Due to the vulnerability of children with disabilities and the history of exploitation they've experienced, the content shared by parents of children with disabilities, it is more heavily monitored and policed by society than the content shared of parents of typically developing and non-disabled children. In everything that we publicly do, say, or post; we run the risk of offending someone making someone feel uncomfortable and potentially oversharing. I often felt like the weight of our experiences was too heavy for public consumption. Conversely, I knew that if I did not share about my experiences, however heavy they felt or uncomfortable and made people feel, these experiences - my experiences - would never get closer to becoming destigmatized.

Erica 05:22

As the host of a publicly broadcasted podcast, I realized that it was my responsibility to set the rules of engagement and to be an example of openness. Here is a clip from an earlier episode in Season One explaining just that:

Erica 05:43

I want to remind everyone at this podcast will be a safe space where people can share about their vulnerable experience without the fear of judgment from others. To set that example, I felt it would be best to start this off by sharing some of my own thoughts and feelings of a very personal nature, about the things that have influenced me to start this podcast. This will be far from perfect. So take caution. I'm going to mess up, I'm bound to say the wrong thing, and I will certainly stumble in my efforts of using the correct language. Because that is what happens when you're working to unlearn a lifetime of internalized ableist thinking. And I say that as an adult, who is only now learning how to embrace my disabled self, rather than trying to prove myself in spite of my disabilities.

Erica 06:46

Researchers Currie and Szabo found that the personal narratives of parental caregivers have historically remained unvoiced due to the parental fears of social misconceptions and negative stigmas associated with illness and disability. They found that parents of children with neurodevelopmental disorders experienced higher levels of stress compared to their peer parents of neurotypical children. When examining the experience of social isolation and exclusion of parents who care for children with complex conditions, they found that parents express feelings of detachment, fear, and stigma from within the medical, social and family settings. Additionally, they reported that these parents felt further isolated because their children were perceived to be socially and medically different. And the rarity of their conditions resulted in the dismissal of their experiences, their struggles, and their needs.

Erica 07:48

It was revealed that when interacting with other families of typically-developing children, parents of children with rare diseases expressed feelings of guilt and discomfort from feeling like a social taboo due to social stigmas surrounding their unconventional parenting struggles with a disabled child. In line with the feelings that I know I've personally had, they found that parental caregivers often felt judged more harshly than other parents for their reactions when standing up and advocating against the discrimination of their children. And I want to just take this one step further...while I'm not stating this from any specific article, I just know this to be true based on personal experiences, and the stories I hear from the work that I do. If I have ever felt judged harshly for my reaction in advocating for my children, the reality is, parents who are multiply marginalized experience that harsh judgment and a policing of their reactions when standing up and advocating for their children.

Erica 08:57

At first, I deeply feared of the judgment, and I was extremely careful with every word I meticulously chose to speak. Eventually, I grew braver, and I was inspired to start expressing my less-censored thoughts and feelings. Still, with each new episode, I perpetually feared that I had gone too far, I had said too much, and I had surely offended someone who I cared about. However, I am happy to share that these fears that consumed me were eradicated by the public reactions to each episode. With each comment on social media, with every private message of encouragement, and each person who relayed to me that they related deeply to the content on the show; I realized that the more that I spoke my truth, the more listeners embraced my lived experiences, and the more they wanted to hear. One listener and fellow caregivers stated the following, and I quote:

Erica 09:59

"I love how you stress the aspect of trying not to be judgmental in this forum. I think being judged as both a parent or caregiver and a disabled person, it makes it difficult to trust yourself and others. Keep this conversation going so more people become acquainted with perspectives and choices faced by loved ones who have or care for those with disabilities." End quote

Erica 10:25

Reactions and responses such as these, they informed me that I had created a safe space as I had intended and that our truths, no matter how taboo they may be, are worthy of being heard. That's right, our stories matter. I've since come to learn that this raw vulnerability shared on the podcast, it is precisely what makes it appealing. Vulnerability turns out to be the secret ingredient, and it results in content that captivates and intrigues the masses. As humans, we intrinsically want to know that others share the experience of navigating hardships. Providing a safe space for the guests and the listeners to explore these sensitive subjects, however far we may be from having them all figured out, ft is what facilitates the feelings of connection for the audience.

Erica 11:22

Layered Lives

Erica 11:26

There are many layers of the lives lived for those involved in complex needs caregiving, and I personally crave to hear the raw and unfiltered truth of them. Not only do I crave to hear stories of my peers in the trenches of this life, I also want to hear more about the lives of the people who help to pull us out of those trenches, and when they can't pull us out, they come down and join us.

Erica 11:56

I strongly believe that sharing our personal narratives, or our stories, it provides an opportunity to make virtual connections through learning about our common experiences and our differing perspectives. In the research I mentioned earlier, on "Interactive Interviewing and Narrative Exchange Between Mothers of Disabled Children," by Dr. Green, they describe that the goal of personal narrative is to facilitate change and personal growth, that this simple act of telling one's story has therapeutic benefits. In this study, Green references the narrative research work of Romanoff, citing that "the therapeutic value now only resides in the telling of the story, but also in the listening of the story."

Erica 12:48

As noted by Dr. Green, the community of people with disabilities has long expressed growing frustration with professionals from a wide variety of disciplines whose work has left them feeling marginalized and even pathologized, rather than understood, respected, and valued. Currie & Szabo’s work stresses the importance of allowing parental caregivers the ability to voice their perspective. In doing this, it validates the caregiver’s personal experience and the systemic success and failures of the healthcare and social systems. They argue that not only would this reduce feelings of isolation and exclusion, it would also assist professionals with the development and implementation of policies and services that could directly benefit the lives of parental caregivers, and the children they care for.

Erica 13:48

I will never forget how overwhelming it felt to not only be a new mom, but to suddenly learn the skills of being a nurse, neurologist, therapist, caseworker, and equipment technician. Having a child with a rare diagnosis often means that by default, you become the expert on them because the likelihood of your care team having an experience with the rare condition, it's fairly slim, and that is further reduced when your child has a perplexing condition that remains undiagnosed. Many parents have no choice but to research their child's condition beyond the limited information that they're given in the clinical setting. An excerpt from Season One, titled "Love Needs No Words," it's worth quoting at length. It details the personal account between a fellow parental caregiver Jenny Park, who you heard from last week, and myself as we discuss our own search for information from our peers in a Facebook support group for parents of a child with the same seizure disorder as our own children:

Erica 15:00

They will admit we see things that are comparable. And based on maybe some certain developmental issues, they can say with competence. Maybe this is possible or may not be possible. But at the end of the day, it's hard to say when it comes to these rare genetic mutations, so...

Jenny 15:20

They just don't know. And I think our kids are such a step ahead of science at this point, that we have to learn everything that we can.

Erica 15:32

And isn't that crazy?

Jenny 15:34

Yeah, that for many years, I think that broke my heart the most like my daughter will not get the cure, she probably won't see in her lifetime, the medication that's made that can actually help her seizures or some treatment that might stop these collaterals. What's helped me is, I feel like part of Josie's purpose is to maybe help, you know, the next time a doctor does see a kid with the same diagnosis. Maybe Josie's information in her life can help further kids and further treatment.

Erica 16:08

In a 2014 study that examined provider reactions to patient and caregiver use of online health communities, researchers found that due to the time constraints during clinical appointments with health care providers, patients expressed difficulty in obtaining diagnosis-specific answers pertaining to the home management of treatment and emotional support, which resulted in the patients and caregivers referring to online health communities for these needs. In this same study, health care providers recognize the clinical time limitations as a barrier, but there's support for the patient's desire to obtain outside information regarding the management of their diagnosis, well, it was mixed. In addition to discouraging patients from seeking information beyond what they provided in the clinical setting, some health care providers dismissed and discounted the accuracy of the information parents received online. When patients and caregivers reported a negative experience with their health care providers, they expressed feeling marginalized, disempowered, and chastised.

Erica 17:32

These negative reactions from health care providers did not, in fact, discourage patients and caregivers from seeking out information online. Instead, it jeopardized the relationship, and it prompted them to find new providers. The most fascinating aspect of this study is that it revealed that individuals primarily sought out online health communities for emotional support. And they nearly always shared information with their health care providers for confirmation of accuracy and relevance of the information to their own illness or the illness of their loved one. In the following clip from that same episode I shared earlier, Jenny and I talked about two positive and supportive reactions from health care providers when confronted with our pursuit for information online.

Erica 18:30

And, you know, I'm sure doctors and providers do appreciate that to an extent because there are a lot of things out there. And we know, what is applicable to my kids may not be applicable to yours, despite their similarities.

Jenny 18:47

For sure. I think, I think, too, when you have a child with such a rare diagnosis, you have to know the ins and outs of them and their treatments. And because I can't tell you how many times I mean, we've never been in a medical setting where a doctor or nurse said, "Oh, yeah, I've heard of that," or, "I know what that is" Instead, they're asking you questions about, you know, this genetic condition. And so you have to really know your stuff, and be able to educate the professionals almost on this and be the best advocate for your child. It's difficult.

Erica 19:27

And I think from what I've heard so far, they appreciate that.

Jenny 19:31

They do.

Erica 19:31

One doctor described it to me, he said, I mean, it's amazing that we found one other family that we're certain - we know, now we have the data, the shared DNA to report - that their daughter had the same condition as ours. We found each other through Facebook. That's insane. He said, "We are in a world now where you can find the answers faster than our research, just by getting out there sharing your story, and finding people who are experiencing similar things."

Erica 20:12

In examining the parent’s perspective of caring for a child with a rare disease, Currie & Szabo found that despite the parents being the primary source of knowledge on the disease, health care providers did not utilize the parents as resources when navigating and coordinating care. This is unfortunate. And as Currie & Szabo suggested, it is essential for health care providers to recognize the value in the interactions with and the contributions made by parents of children with rare diseases. Thankfully, there are medical professionals out there who do see the benefits of learning from parents and patients.

Erica 20:56

As a guest survey respondent and medical professional described, "The benefits from learning from the medically complex community are tremendous. Especially when it comes to health care management, along with the collaboration of several disciplines, and stakeholders to promote the best outcome for the children." A listener survey respondent who identified as a developmental professional and a relative to a caregiver or person with a disability stated that "The most beneficial aspect of the podcast was, and I quote, parents and caregivers giving details on complex medical needs and how healthcare professionals can help complete the village. A parent knows their child more than any doctor or healthcare professional. Always take the time to listen to the parent or caregiver." And while provider reactions are mixed in terms of whether or not they appreciate when parents seek online information and resources, it's clear that parents and caregivers need these layers of support. And in fact, the information caregivers find can be valuable sources of knowledge and understanding more about their child's diagnosis.

Erica 22:16

Humans First, Labels Later

Erica 22:21

I know that I personally learned a lot from this episode, regarding the day-to-day bureaucratic obstacles that healthcare workers face when trying to deliver exceptional care. I want to paraphrase something important that I think deserves repeating. Dr. Tanios said something towards the end of our conversation in regards to what can be accomplished when a healthy and trusting relationship exists between a care team and their patients or families. She said, and I quote, "We try to do our best. Knowing that nobody, neither you nor me, has a magic wand." And you know, I could hear it in her voice. As I've heard it in the voice of so many other dedicated healthcare workers. They are here to help. They want to fix us all. But sometimes the impossible becomes just that, impossible. They are, after all, humans, just like you and me. As hard as it is to hear that, I think it is important to remember.

Erica 23:36

Our access to the skills, knowledge, perspectives, and opinions of medical professionals is limited by a number of things, including our physical and geographical proximity to the healthcare facilities that they are employed by. Additionally, our clinical appointments with medical professionals are limited by strictly scheduled time constraints, which leave little to no room for them to get to know us as a person separate from the symptoms, let alone for us to know them at all. These limitations directly hinder our ability to relate to these professionals as humans outside their roles in the clinical setting. Professionals, especially medical professionals are often provided with a snapshot of information regarding our clinical status. The well-being of our health, or the health of a loved one, it is greatly dependent on the support we receive from these professionals. However, we rarely have the opportunity to know them as unique individuals outside their professional role, nor do they have the opportunity to know us as unique individuals outside the diagnosis that has brought them into our lives. It is for this very reason that I felt it was necessary for the podcast to include the perspectives of medical professionals, like doctors and nurses, along with developmental professionals, like therapists and educators, and social workers.

Erica 25:12

Before addressing any aspect of their lives as being impacted by disabilities or complex medical conditions, with each guest interview on the podcast, I made a conscious decision to ask them a series of questions about who they are as a person. I consider this part of the interview the humanizing component, allowing the guests to share details of their lives that we don't usually receive at the surface level or in the clinical setting. It helped to frame the remainder of our conversation from the perspective of a human free from the labels of caregiver, doctor, social worker, etc. In return, I openly responded with whatever reaction came naturally to me. This style of interaction, it removed the feeling of hierarchy from each of us, making both the guests and myself feel more comfortable and relaxed because we were attending to each other conversationally, as equals. An example of me opening with a variety of humanizing questions can be found in the conversation I have with Dr. Tanios, in the episode in Season One titled "Complex Medical Care." You see, Dr. Tanios has played a tremendous role as a physician in our medical tribe. From the very early days of our journey as caregivers, she's advised and supported us through a number of highs and lows. As one of the first people to greet our fragile son after his birth, she has witnessed our family grow in numbers, and in strength. She knew so many details about our family and in our opening Q & A, I was able to learn more about her outside of her role as a doctor.

Erica 27:03

Thank you so much for being willing to do this with me.

Dr. Aline Tanios 27:07

It's my honor, really a true honor.

Erica 27:10

So I have a couple of questions to start off the top with. I was inspired to do this by Brene Brown, which I know you love as well.

Dr. Aline Tanios 27:17

Oh yes!

Erica 27:19

I'm just curious to know, what is your favorite song currently to turn the volume up for?

Dr. Aline Tanios 27:26

Okay. There's several and in different languages. But I'm going to share the one that you and I will know very well. I love "Roar" for Katy Perry. And I love "What Doesn't Kill You Makes You Stronger" for Kelly Clarkson. These are like, I think the whole neighborhood can hear can hear me driving by if they are on. It just gives me lots of positive energy and confidence. And yeah, these two...like I said, I do have others that are in Lebanese that I just feel like I'm dancing when I'm driving. And my kids look at me like what's wrong with her? But they got used to that

Erica 28:12

There's something about both of those songs that can make me go from sitting to just standing up and going "I've got this!".

Dr. Aline Tanios 28:19

Yes

Erica 28:19

I've got this. I've got this?

Dr. Aline Tanios 28:21

Absolutely. I think one time I was leaving work not too long ago and I had a long, exhausting mentally draining day. And this song popped up. And I'm like, "That's it. This is a sign! That's it!"

Erica 28:40

Regarding this humanizing segment of Atypical Truth, one guest and medical professional stated, and I quote, "I really enjoyed this experience. Erica did a great job of keeping the conversation casual and free. And this led to an easy forum to share more personal feelings and experiences." A listener and fellow caregiver confirmed the importance of these humanizing questions when they stated, "The interviews with the doctors are so interesting. We never get to hear the human side of their lives and perspectives." These two individuals who have vastly different experiences with relationships to the person being cared for, they both recognize the value of sharing one's humaneness.

Erica 29:27

Throughout each episode, I follow a specific interactive interview structure that not only allows the guests' humaneness to shine through, but it also allows them to share about their experiences, both personal and professional - as a person first, with the label to follow. Approaching the conversation in this style provided the guests an opportunity to share about their lived experience as people first and then allowed for the natural flow of their personal or professional experiences to come through. For patients and caregivers who rarely see their medical team in any other capacity outside the clinical setting, and this approach to an interactive interview, it provided the audience a new perspective of these individuals as - I don't know imperfect, fallible, loving, and caring peers, not just strictly professionals. One listener survey respondents stated the following about their experience of the podcast as a whole:

Erica 30:28

"The information experiences and stories they helped me as a mother and a nurse. Stories from the medical side help remind me how human we are as medical providers, and how emotionally invested some providers get to the well-being of patients and understanding the limitations of medicine. Even though I know them from the nurses’ side, it's harder to separate when and involves my daughter. And I'm less likely to be understanding of mistakes or miscommunications regarding her care. The objective reminder of these things, it helps me to feel less misplaced resentment towards people involved in her care. Stories from the caregiver and patient side helped me to feel less alone and give perspective to what we've been through." End quote.

Erica 31:20

A guest respondent and medical professional had the following reaction to being asked if they felt like they were able to tell a part of their story that they don't usually get to share. They stated, "This is a unique and different experience for a special cause. Sharing with others how we have the ability to provide a glimpse of kindness, attention, and hope, when things may not be typical, is a doable mission. The idea of the podcast is noble and exceptional. And I truly believe that this will be well-received and beneficial to a population larger than the medically complex community." End quote.

Erica 32:01

Another guest respondent and social worker stated, "This is the first time I had ever talked about what it is like to work with families with children with disabilities. I hope people realize that people like me are here to help others and really enjoy doing that." End quote, When guests asked in the survey if they'd ever personally benefited from learning about the personal or professional experiences of someone within the disabled community, all agreed that they had, in fact, benefited at some point in their lives from learning our stories. One guest a medical professional provided this example, and I quote, "I've benefited greatly as a medical doctor, from hearing how acute and chronic medical diagnoses affect not only the patient at hand but also the larger family and friends support network. I believe that it has made me a better and more caring physician." End quote. Another guest and social worker had the following to say about the personal benefits of hearing stories like my own, "I feel that by getting to know the families that I work with, and learning more of their day to day routines, struggles and successes, I am better equipped to assist others." End quote.

Erica 33:22

And this concludes Part Four of the research bonus episodes. (sigh of relief) We're almost done folks. Next week, I'll be sharing from the sections, "The Big Ask," "Participant Contributions to the Conversation," Personal Reflection," and "Sharing the Mic." As mentioned before, you can find a list of the references in the show notes. The beautiful music that greets us at the beginning and end of each episode is performed by my favorite contemporary music collective Amiina. The cover art for Atypical Truth was designed by Kendall Bell.