What’s is all about, anyway?! Join your host, Lauren Freedman, for an intro to the WHO, WHAT, and WHY of UNINVISIBLE.
This is a short episode, perfect for listening on a quick walk or drive. Get to know us and our mission to bring greater awareness, insight, info, and, above all – humanity – to the invisible illness community and beyond.
Key links mentioned in this episode:
In this episode, Lauren reveals:
- how she first discovered she had Hashimoto’s disease and sleep apnea
- how these diagnoses affected her both personally and professionally
- why advocacy for invisible chronic illness is so important to her
- how to get in touch with questions or suggestions for the podcast
- how excited she is to share this journey with you, the listeners!
Welcome to the premiere episode of UNINVISIBLE!
So, what is UNINVISIBLE anyway?
That’s what we’re going to get into in this teaser episode. I want you to get to know who we are and why we are — so we can better serve you and engage with your lovely selves. And that starts with my story…
One weekend a little over a year ago, I spent 40 hours in bed. Perhaps coincidentally, this was also almost three months to the day after I stopped using birth control, just to give my body a break.
Now, I’d done this weekend in bed before, in my ’20s, but at that time it was a combo of depression (and I’ve done a ton of work on myself since then), hard partying, and late nights hitting the books. But I’m in my mid-‘30s now, and this intense fatigue just made no sense in my older, wiser body. I also have no filter, so I put all of this out there on Facebook — as you do. Like: “Hey guys! I’m crazy tired and I don’t know why. I’m looking into it, but like, thoughts and suggestions welcome.” Something like that. I started really engaging with my network and it opened up discussions about health, especially as it applies to women, who often feel marginalized in conditions under which men may be more readily acknowledged.
Like, for example, when it comes to diagnosis of something that can’t be seen but can definitely be felt. This is what I mean when I talk about the umbrella term of “Invisible Illness”. I knew what I was going through was more physiological than psychological, so I went to the doctor. The nurse-practitioner ran an autoimmune panel and threw a thyroid panel in there because I have a family history of hypothyroidism — which is under-active thyroid, for those of you still catching up. The tests came back positive for autoimmune, and my thyroid numbers indicated that I was actually in a hyperthyroid state. It was working like crazy and essentially attacking itself. I was having what is commonly known as a Graves episode; my thyroid was working the opposite way before settling into hypothyroidism and an autoimmune disorder known as Hashimoto’s Disease.
So, what is Hashimoto’s? Hashi’s is defined by the Mayo Clinic as a condition in which your immune system attacks your thyroid, a small gland at the base of your neck below your Adam’s Apple. You guys…I cannot stress this enough…your thyroid is super-important to all your body’s normal functioning. I barely had an inkling it was there to serve any purpose, but yeah…it’s a big deal. The thing is, your thyroid makes hormones that regulate your body.
Hashimoto’s makes your autoimmune system attack your thyroid and most patients show signs of an under-active or hypo-thyroid.
We’ll get more into this specific condition in future episodes, but suffice to say, I was suffering from chronic muscle cramping, weight gain (it was like my metabolism stopped working), and insane fatigue.
My GP at the time was pretty alarmed, and recommended I see a rheumatologist and an endocrinologist, immediately. Long story short, neither relationship lasted long. It took me forever to find an endo who would take my insurance. Even when I did, she wouldn’t readily admit that I had Hashimoto’s. Months later, I was sitting in her office, tired as hell. She had put me on thyroid hormone, commonly known as Synthroid; she was looking at my latest labs and she told me my numbers looked great. I told her I was still incredibly fatigued. She paused, looked up at me from her chart, and said, “Well, I think it’s time you see a psychiatrist.” And like, guys, if she’d read my chart, she’d be well aware that I have a therapist I talk to every week, and have known since I was 19. So, yeah. That was when I learned I am allowed to say NO MORE to some doctors, and to some people. Their mission may be to help, but not all of them help everyone. Our personalities clearly weren’t aligned. But honestly, it took a tearful phone conversation with my mom to convince me not to see that doctor again.
It might be interesting to note at this point that very early on, based on general blood work and a digestion survey, my integrative medicine specialist, who will be joining us on an upcoming episode, called my diagnosis — like, months before anyone else was willing to say it. And big disclaimer here.
We’re going to be talking to all sorts of practitioners on this program. We aren’t here to sway you one way or another between Western and integrative medicine or alternatives here and there. Really, we want to empower you with information so you can make your own decisions.
We aren’t secretly endorsed by anyone, nor do we have any particular ties to specific practitioners. I have my own team and I’ve been working to create that, and I want you to be able to do the same. So, so after the ‘go see a psych’ episode, I saw another endo. He didn’t seem to see me as a whole patient either. When I crashed after a medication change, he just shrugged it off. I wasn’t happy, so I sought alternative cures. One of the best resources I found was through an amazing coach here in L.A., Sasha Alexander. She’s going to be on a show later on. She directed me to Dr. Isabella Wentz, a pharmacist in Colorado, who has Hashimoto’s and has devoted her career to providing information and resources to others. Dr. Wentz had a list of approved Hashimoto’s practitioners and I went straight to the list and found an integrative medicine specialist, Dr. Lisa Hunt at Holtorf Medical Group in El Segundo.
I hope to have Dr. Hunt and Dr. Wentz on the show in future episodes. Rather than looking at a limited scope of variables in my labs, Dr. Hunt looked much deeper. She answered, lingering questions for me and has put me on a path to total wellness. Granted, I take a lot of pills now, but many of them are supportive supplements that complement my immune system. I’ve turned a corner since working with her, and also I constantly joke that I never would have survived the olden days.
I’m still working toward total function, but it’s part of the journey. In addition, I’ve been diagnosed with sleep apnea, and I’m waiting to be tested for possible narcolepsy or idiopathic hypersomnia, which to my understanding is medical speak for ‘you’re really sleepy all the time and we have no real name for that.’ These are yet more invisible conditions that really make a difference to your daily functioning and are diagnosed using a spectrum of tests. So I’m sure I’ll have much more to share on all of that soon.
Which leads me to an important point. Sometimes it isn’t just one thing. Even when you’re stressed, sometimes it’s your boss and your co-worker and your partner. It’s important to ask all the right questions and find the medical professionals whose opinions you trust and who support your journey.
During the course of all my health revelations, I’m having ongoing discussions with my friends and family about health advocacy. Thanks Facebook! Paths to wellness, alternative and integrative medicine, Western medical science, our frustrations with the American medical system, as well as our heroes within it. And because of my own illnesses, I start thinking about how many invisible diseases are out there — from fibromyalgia and chronic fatigue syndrome, to Lyme disease, lupus, and even mental health issues like depression, anxiety, and PTSD. And I decide, we need to keep the conversation going. I want to serve the invisibly ill community with information. I’ve run the gamut with doctors, specialists, friends, family; I’m still doing it.
And let me just say: It’s okay to not be okay all the time. And it’s okay to look normal and feel really, really off.
That was a huge revelation for me. And I don’t want to be too controversial here since I’m sure we’ve got a diverse audience, but can I just say…I think the pressure to seem just fine when you’re really not is a totally different experience for women than it is for men. I’m actually reading an amazing book all about that right now. It’s called ‘Invisible’ by Michele Lent Hirsch. Buy it. Read it. it’s mind blowing.
For me, the pressure was: I’m in charge of a lot of stuff. I’m working my butt off. How do I keep showing up for the people who need me? I became more and more acutely aware of letting people down, especially on a professional level, but also certainly on a personal level as well.
And that’s why reaching out to people and letting them know what was going on was huge for me. It took me five months of being sick but by Christmas, I had emailed all my closest friends in L.A. and told them I needed their support. It took me a big leap to actually ask for help, but damn it, I did it. And my friends and family? They rallied.
I got support on my journey, but I know not everyone does. And that even those of us with support networks sometimes need easy access to better information. And that’s why I’m here podcasting.
Consider me the newest member of your team, here to support your journey. UNINVISIBLE aims to be a platform for sharing information and bringing greater awareness to these invisible conditions because they totally suck. But also, we’re a community and we have an obligation to take care of one another.
So, here I am. Me, plus guests. We plan to share tons of information and interviews with people from all over the spectrum of invisible disease, and we want your input too. I know I talked about my specific experience today. What are you interested in hearing more about? What invisible illnesses do you want us to cover? Do you know someone amazing who should be on the show? I want to remind listeners that the opinions I expressed today are mine and mine alone. I am not a medical professional, nor do I claim to be so. I am simply here to engage in open dialogue about conditions that often fly under the radar. So let’s keep that dialogue going!
We’d also love to hear from you if you’re the loved one of someone with an invisible illness. In what ways do you go out of your way to support your friend, family member or partner? What can others learn from you?
Thanks one and all for tuning in today. I look forward to next time. This is just the beginning. I’m so excited to share this journey with you.
Until next time, I’ve been Lauren. And just like the rest of you. I’m UNINVISIBLE.