Real Talk: Liz Whiting on Endometriosis and Health Advocacy

Liz Whiting is a women’s health advocate who was diagnosed with endometriosis and now uses her platform to build awareness and educate others on her experience with this chronic illness. In addition to speaking and writing about endo, Liz leads marketing and creative for Daily High Club. For our “Real Talk” series, we asked Liz about her experience with endometriosis and guidance for others struggling with this painful, often misunderstood, illness. 

We get a lot of readers who are struggling with endometriosis and share how difficult it is to find medical help and guidance. Do you have any advice or tips from your own experience?

Community and self-advocacy are crucial! I quickly learned that I had to know myself on a much deeper level to advocate for myself properly to doctors. I had to rely on my virtual community and dig for resources. You grow up thinking doctors are always there to help and have all the answers but once you start going through the healthcare system with endometriosis, you’re quickly shown a world of dismissive doctors, rushed appointments, and ill-informed treatment plans. 

It also took me years to know that there is truly no cure. I would be so disappointed every time a certain diet didn’t work or reacted poorly to birth control. I had to realize that management tools are my best bet and are what are specifically meant for me. Everyone is so different and requires different tools. So it’s quite the journey figuring out what works best for you. 

The best management tools are distractions! If you can’t fight the pain, distract yourself. I have delved into my creative hobbies of painting and writing over the years. I can be off digital devices and fully engulf myself in color and a harmony of hues. Writing also requires a lot of concentration and focus. I absolutely suggest finding a hobby or activity or workout you really love and fully give yourself to it when you’re in pain. It’s tough but I promise it’s worth it. 

There’s so much information I wish I had known! Now my goal is to share what I’ve learned over the years so other people may get some years of their own life back. 

Image courtesy of Liz Whiting

You wrote a whole article about the problematic marketing of CBD products for cramps and period pain. Do you have any tips on what to look out for when someone is seeking relief?

Always be weary! Don’t just buy the first product you see and even be discerning of products advertised through big publications. There are so many brands that prey on people who menstruate and deal with chronic pain symptoms. Read reviews, see if they have trusted lab results and how they source [ingredients]. It’s a lot more research for the consumer but, believe me, some of the products for the prices I’ve seen are crazy. I hate brands that try to associate their product with people’s health stories. They are very personal!

“My endometriosis was just a campaign to them.”

Liz Whiting

I had a brand reach out to me last March for Endometriosis Awareness month and wanted me to promote a very intimate product without compensation and were asking for quite a bit content-wise. They wanted to associate their very expensive product with MY story, for free, without even trying the product first. When I brought up these concerns and asked to try the product, they said I would be outside their promotional period and would reach back out. My endometriosis was just a campaign to them—what I’ve had to spend hundreds of hours, thousands of dollars on, dealt with years of my life affected by pain and other symptoms. Higher-ups reached out to try to right things but I already knew the agenda. At the end of the day, many of these brands are just that—brands. I know they have to run campaigns and hit the bottom line but there should be a lot more care involved when you’re asking to associate a product with helping relieve symptoms of a chronic illness. We’re not just talking about a pair of shoes here.

I hope brands figure out better ways to reach out to people with chronic illness and if they’re going to delve into that realm; set aside budget and time so the relationships are properly fostered and you can properly compensate the people involved. Otherwise, it’s very transparent who this is benefiting and it’s extremely one-sided. I ultimately would love to see people find greater independence in their consumption! At-home CBD remedies are becoming more readily available so the user can have more control and rely less on brands. I get we’re discussing CBD in a capitalist society—but at the end of the day, many use it as a medicine and the way brands are marketing and pricing the product is atrocious.     

You’re a C-suite-level marketer who also deals with the incapacitating pain endometriosis can cause. What’s your advice for someone whose career ambitions feel they’re being thwarted by endo?

When I was first being clinically diagnosed, I was so relieved to have answers. But I also realized that my symptoms were very real and it was hard to continue having an office job. In a past life, I dreamed of corporate life (crazy, I know) and climbing the ladder. I used to push myself to the state of burnout because I wanted to prove myself. But I had to opt for a different plan. I had freelanced in college and contacted clients again to let them know I was offering services again. There wasn’t a table for me anymore, so I created my own. I leaned heavily into the digital world and created opportunities for myself that lend to where I’m currently positioned. I learned how to manage and maneuver because I had to.

My advice is don’t sell yourself short, don’t be embarrassed and don’t think your life has to end because you have endometriosis. We are stronger and more resilient than anyone we work with to be honest.

Liz Whiting

There’s a common question with chronically ill people: am I getting better or am I getting used to it? And 9 times out of 10, we’re just used to it. I have a much higher tolerance for pain and have learned management tools to help me get through life. I could be in the middle of a meeting or speech and have a flare-up. I’d quietly excuse myself to go to the bathroom to reset. You’d never know. But I’ve also learned to communicate better because I have to also be vocal with people about what I go through. It’s important to let people know when I truly need to tap out because I simply cannot function. 

My advice is don’t sell yourself short, don’t be embarrassed and don’t think your life has to end because you have endometriosis. We are stronger and more resilient than anyone we work with to be honest. We deal with things that most of the population would be sick just thinking about. There is no problem that outweighs what we must go through on a daily basis. I’ve used this as a strength in my workspace because I know I can get myself and my team through anything. So can you! 

Did endometriosis change any of your perceptions around femininity or beauty?

I have been on an immense journey of learning the various definitions of femininity and beauty. I used to be heavily into mainstream fashion and beauty and have really eliminated much of that from my life. I opt for comfort and a more natural approach to my beauty regimen. I especially have dealt with hormonal acne and cystic acne, which I used to be so embarrassed by! My body completely embarrassed me for so long. I think femininity and beauty are fluid and truly in the eye of the beholder. I always thought that eye was someone else! But you are your own true beholder. I had to learn my own definition of beauty for myself but it unlocked a much deeper relationship internally. I identify as a cis woman and would consider myself “feminine” in my own right, but that definition might be different for someone else and I absolutely respect that. Some people with endometriosis also don’t identify as a woman and I respect that as well. I try to be as inclusive as possible with my language, while also staying true to my own personal perspective from me identifying as a woman. 

Endometriosis makes a person really question our long-held tropes of “womanhood.” It can affect your fertility and sex life and cause other reproductive health issues and non-reproductive health issues. There is debate over whether it’s an auto-immune disorder and not solely a reproductive disorder. I personally questioned my value as a *woman* when I was incorrectly told by a doctor I’d have to freeze my eggs and get my uterus removed. It was so jarring at first and, luckily, I did not go through with it. But now I feel more comfortable than ever in my own body! I have a strong support system to help me navigate my own definition of femininity and what that means to me, but also what that definition could mean to others. It’s important to me in my content to balance my own identity while acknowledging and representing the identity of others too.   

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