Community, Visibility & Care: A Conversation with Lauren Freedman of Uninvisible Pod

Lauren Freedman is the host and creator of Uninvisible Pod, an award-winning podcast about invisible conditions and chronic invisible illness, featuring interviews with survivors, their loved ones, advocates, and experts in varied healing modalities, from medical to holistic.

We spoke with her over Zoom to talk about her background, how she got to know the team at Embr, and ways we can all be better allies to those living with chronic illness

Tell me a little bit about your background. How did you get into chronic illness activism? What prompted you to start your podcast?

I think of myself as an accidental activist, all of this was all sort of happenstance. I was working in business management and my life basically turned upside down.

I was working on the side writing about women's health and working as a women's health activist in my spare time. And my own misadventures in medicine kind of informed my activism work. So I was working full time, and I got really sick to the point where I was experiencing really intense brain fog, functional exhaustion...just complete fatigue. I would have to call my boss every morning and be like, I can't come in for another hour, I can't come in for another hour. And it got to the point that there was no point in coming, and I ended up leaving my job.

I eventually got this diagnosis of Hashimoto's thyroiditis, which is an autoimmune disorder that affects the thyroid as well as obstructive sleep apnea. Since I was a teenager, I've been diagnosed with depression and anxiety, so I have all of these forces sort of moving around in my body. When I was diagnosed with Hashimoto's in particular, I went to look for resources and community. It wasn’t really available, I started reaching out to networks on Facebook and I said and I said: “these are my symptoms. What's going on?” And almost immediately, people started coming out of the woodwork, especially women.

I realized a huge percent of people in my immediate network had gone through health crises of their own, and we weren't talking about it. I had close friends that I was like, “how did I not know that you had this syndrome?”

So I realized in the sharing of these stories that I wasn't alone and that there is a human face to medicine separate from this sort of sterile world that I had been a part of while trying to understand my own journey. I was able to actually maneuver and navigate through all of that to find other patients like me.

I have a background as a voice actor, so I had the [recording] equipment. I was having these incredible conversations that were helping me figure out my healing. So I hit record on conversations, sharing my perspective on my own experience with others, and that was pretty much the podcast.

What have you learned in having these conversations?

The podcast has continued to support my healing and has given me space and the acknowledgment to navigate the potential other diagnoses, as well as medical gaslighting.

I realized the inequities in the health care system, particularly with regard to gender and race. A large portion of the people I speak to are women, and I speak to a lot of women of color and people of color in general. The prevailing experience has been that every single one of us has had a moment where we haven't been believed or we have been told that it was all in our head. And that narrative needs to change.

So as long as we keep having these conversations, we’re recognizing that it's not all in our heads, not all hysterical. We want to be nudging the health care system to change. For me, I’ve realized my activism is not us picketing on a lawn or going to a march, it is us having these very groundbreaking conversations as far as health care is concerned.

Medical bias happens from many different perspectives. I mean, it starts from the research phase now. So if there are practitioners and researchers who are listening to these stories and understanding the human side of this experience, they can then take those stories and use them to generate change in their own work, which I think is exciting because it in that way, it helps practitioners and scientists, but it also helps those of us who are patients because it gives us a community as well.

How did you get connected with Embr? Has temperature been an issue you’ve struggled with for a long time?

Locations can cause heat sensitivity, and I live in what is considered to be a warmer climate. I was experiencing a lot of discomfort from elevated thermal experiences. Right before I launched the podcast, I heard about Embr and I reached out to the team, just saying that your product was one that I was really interested in. I also knew that people who are dealing with these same kinds of chronic illnesses and treatments could gain a lot of assistance from the Wave.

When you think about this whole-body experience of chronic illness, for a lot of us, it's something that's been happening for a long time. For some of us, it's new and we start experiencing heat sensitivity or cold sensitivity as related to the onset of illness or the treatment.

What I love about the approach the Embr Labs team takes is focusing on one small element, one seemingly deceptively simple concept. It can actually make a huge difference in a lot of our comfort levels. For me, temperature makes a huge difference not only in my physical comfort but also in my mindset. When I'm hot, I am bothered. I already deal with potential brain fog. So when I’m extra hot, it makes it harder for me to process feelings, my thoughts. If I'm dealing with a chronic pain issue, the last thing I want is to be uncomfortable in terms of temperature on top of that.

So the Wave has been good for both your physical and your mental wellbeing.

Oh, my gosh, like a total game-changer. Every time I travel, every time I am going somewhere hot. Now with summer starting as well, I'm strapping something on every day. I like knowing that I have this device that will keep me comfortable wherever I go. I feel so much more in control of my experience as well, and that is extremely freeing when you're someone who has felt like your body has betrayed you with chronic illness.

The minute that you take care of this one simple element of your physical experience it’s amazing what a huge difference it makes in terms of your overall outlook. It’s an emotional thing as well as a physical thing, like potential judgment from others because I'm sweating, or maybe I've got droplets rolling down my face or I'm sweating through my shirt or I'm experiencing total body discomfort. The cooldown is such a relief. It makes the pain more manageable, and that makes everything else more manageable.

One of the great things we always joke about in the “Spoonie” community [the chronic illness community] is to be friends with someone who has chronic illness because they'll always have snacks and survival skills. We always have a bag full of tricks when we go out. And for me, my bag of tricks is a lot of stuff to manage heat and the Embr Wave is central to that experience. I wear it and people ask me about it now because they're like, oh, what's that cool thing you're wearing? So it's a great conversation starter, and I have no shame telling people that I use it to manage my chronic illness. So to be vulnerable like that to people, you end up destigmatizing those conversations. There are a number of people who are like, oh my gosh, me too. It helps create community and share your experience with people. And that's very empowering as well.

What would you like people who don’t live with chronic illness to know about those who do? What can people be doing to be good allies?

There are a few things, number one right now is wearing your mask. I want people to understand that when you don't wear a mask when we're in the midst of a pandemic, you're not only practicing ableism [discrimination against those with disabilities], but undervaluing the lives of those with compromised immune systems, as well as communities of color which have higher death rates. So I really need people to wear a mask because it's not about you. It's about other people.

I would also want those who are not as familiar with chronic illness experience to know that none of us choose to be chronically ill. It's not about attention-seeking. But we need to give due and human respect to people who have chronic illnesses and be open to these stories because 157 million people in the US live with chronic illness.

Right now, though, it really is about Coronavirus and masks for me. We need to be thinking about our communities and what is the greater good here and not worried about, like your need to go out and have a drink, like have a drink on your doorstep. You know what I mean? There are ways. There are a million ways. I mean, take it from those of us who know how to be stuck inside.