Living with Endometriosis and POTS: My Story

Sarah Thunell
Jun 1, 2024
3 min read

Updated: Jul 18, 2024

It’s been a few years of intense changes, personally and professionally.

Sarah, a fat, white woman with red hair and glasses, lays on her stomach leaning on her hand with a tabby cat next to her

Several months ago, I drafted this as a post for Instagram but never published it. Here's an updated and expanded version for you.

Disclaimer: The information shared in this post is based on my personal experiences with endometriosis and Postural Orthostatic Tachycardia Syndrome (POTS). I am not a medical professional, and this should not be considered medical advice.

Endometriosis: On Pain and Persistence

I was already out of commission for some days to weeks each month from pain and nausea with endometriosis. This chronic condition has significantly impacted my daily life, often leaving me either bedridden or pacing like an animal trying to escape the cage of her own body.

Not to be dramatic. Literally, I would undress because the pain was so intense my skin would crawl having anything touch it. I have never felt as close to nature in the dark ways. The sounds that have come out of me.

I've been unable to participate in normal activities from school and work days to travel opportunities and park outings and Christmases.

It's been about 20 years of medical abuse and neglect. My diagnosis is technically unconfirmed, as endometriosis is only officially diagnosed and treated through laparoscopic surgery. Despite these challenges, my current care team is great and supports the diagnosis, providing much-needed validation as we continue to explore options for surgical assessment.

Now I have flare-ups where I can’t stand or sit up without getting lightheaded.

Hello, Postural Orthostatic Tachycardia Syndrome (POTS)!

I was privileged -- let me tell you! the rarity -- to have the POTS/dysautonomia diagnosis confirmed by a specialist relatively quickly. POTS is an autonomic nervous system condition, so fortunately, even though the T of the POTS acronym introduces a scary heart word, tachycardia, my heart is structurally fine. It just beats fast when I stand to compensate for other systems not collaborating effectively.

Living with POTS means that simple activities like standing, walking, or writing long blog posts can cause my heart rate to spike to try to get blood to my vital organs, which proves to be inadequate compensation I guess because I'm still dizzy and severely fatigued. Like, good try, heart. What a buddy.

My POTS has a hyperadrenergic influence, sometimes called HyperPOTS, meaning my body produces too much adrenaline, which exacerbates symptoms.

Fun fact, HyperPOTS patients' adrenaline measures high even in our sleep. Not me over-functioning in my mental health to try to relax when it was impossible. That for sure wasn't thousands of futile hours of therapy and self-development. Nuh-uh.*

*actually still a huge mental health nerd tho

Career Challenges: Transitioning Amidst Health Struggles

Due to my health, I had to quit in-person parent coaching and nannying. It was a difficult decision, as these roles brought me immense joy and fulfillment. I started by reducing to 4-days per week contracts, then 3, then 1, then just taking occasional babysitting gigs. However, my health no longer allowed me to meet the physical demands of childcare.

My business wasn’t ready to switch to entirely virtual parent services, so I took an administrative role with a non-profit in eviction resolution. It seemed like a promising opportunity to continue supporting Seattle families while accommodating my health needs. Unfortunately, that contract ended when the standing order that funded it expired.

After that I was receiving unemployment benefits. I've exhausted the amount I was allotted, so they're done too. I now face financial uncertainty with no income.

I'm tired, but determined to find a way forward.

A fat, white, disabled woman with glasses laying on a coach with a laptop on her belly — It's hard to work at a computer laying down. Gets uncomfortable quickly.

I have zero income now and, gosh, the costs keep coming.

Costs of poverty and chronic illness: compression socks, rent, electric bills (and POTS comes with heat intolerance), etc. +the potential costs of stress on the body: cardiovascular issues, immune system suppression, digestive problems, musculoskeletal problems, endocrine disruptions, sleep disorders, chronic fatigue, anxiety and depression, cognitive impairment, emotional exhaustion, relationship strain, social isolation, reduced productivity — I'm not a productivity stan but it would be nice to be able to do things. Also, I put a cute, little heart on there just because.

Still, I want you to know it’s not all bad.

a tabby cat in the elbow of a fat white woman shown only as part of a bust and her hand wearing a pulse oximeter — Tyrone found a new favorite snuggle position in my elbow crook while I regulated my heart rate

Embracing my Disabled status has brought me into spaces full of amazing people having deep, funny, wise conversations. Sick people are the best.

I’ve become what one of my support group facilitators calls “a miner for joy.” This is hard work to behold, I assure you.

I see more and more how all the social expectations and norms we live by are just made up, such as the assumption that we're supposed to pull ourselves out of hardship through independent grit.

We can change the scripts to kinder ones.

I am harder to shame, because seriously, the game is rigged, did you know?

Disability has invited me to do transgenerational work related to my mom and her experiences with impairments caused by Neurofibromatosis II and her communities' reactions to those impairments, which were often pitying or avoidant, occasionally warm, generous, and accommodating.