Mae Whitman: ‘Endometriosis Is Like Being Shot With a Cannonball in the Stomach’

For 23 years, Mae Whitman, of NBC’s Good Girls, suffered from severe, unexplained pain. It started when she was a kid, challenging her on set, and as she got older, it got worse, creeping in and absolutely leveling her, leaving her vomiting and curled on the bathroom floor.

Last year Whitman was diagnosed with endometriosis, a disorder in which tissue similar to what lines the uterus grows outside the uterus. There is no cure for endometriosis—which affects as many as 1 in 10 women and can be difficult to diagnose—but Whitman recently underwent laparoscopic surgery, which has helped reduce the severity of her symptoms. She also manages the disorder with a holistic health plan.

Here, the 31-year-old opens up to Glamour about the ways endometriosis has impacted her career.

Glamour: How would you describe the pain of endometriosis?

Mae Whitman: Sometimes, when I’m sitting there doubled over on the bathroom floor, I try to conjure an image of what the pain feels like. So far, I’ve come up with: being shot with a cannonball in the stomach, people dragging bread knives down the fronts of your ovaries like nails on a chalkboard, and having an elephant decide to take a power nap on your upper thighs. In all seriousness, it’s hard to compare because it’s such a specific kind of pain. It’s sort of like tooth pain, when it seems to go straight to your brain and pervade your entire body and make you totally miserable.

When did you first start experiencing symptoms?

It started when I was little, around age seven. I was doing a movie called One Fine Day with George Clooney—hold your applause—and I started to get really severe digestive issues. It was the nineties, so my parents said, “It's probably lactose intolerance,” because it seemed like everybody was getting diagnosed with lactose intolerance in the nineties. But it didn't stop, and it got to the point where I was going to the hospital with all this pain and doctors couldn't really find anything wrong. And we just drank Lactaid and moved on. I would just deal with it.

But it happened a lot. Throughout the years it was something that I had to override when I was on set as a kid. And it was difficult because the kind of pain that I experienced from it is very extreme, and it got worse as I got older. When I turned about 15 or 16, I started to actually throw up from the pain. It would start about a week before my period; I would get nauseous and uncomfortable and very hormonal, very bloated. And then this pain would come for a few days, and literally nothing would stop it. I went to doctors, I was given opiates, I was given the most hard-core drugs you can find. That didn't do it. I was given digestive suggestions for my diet; that didn't do it. This was something that had been this big question mark in my life the entire time that I was also really trying to focus on work and growing up.

How many years did it take you to get an official diagnosis?

I had started looking for a proper diagnosis at around 14, and I didn't get diagnosed until, I believe, after my 30th birthday. So it was about 15 years of really searching and really trying to figure it out.

What is it like to be in that amount of pain for so many years?

One of the most difficult factors of this somehow isn't the gunshot-wound pain. It's the psychological pain that you experience. It's also the unknowing that really adds to the psychological damage. I think anytime someone is in chronic pain for so long, it's almost like there are phantoms living in there. These ghosts of where even when you don't feel the pain, you remember it in your body and then you still kind of feel it.

And again, this is all stuff that, without knowledge of what the science is behind it, I was just like, “Am I making this stuff up? Am I crazy? Am I even having the pain? Am I not having it? Is it real? Where is it stemming from?”

A big part of endometriosis is it's really isolating, and it really can make you feel like no one understands. Even your best friends, even your family, nobody understands that it could be so serious. And I think people think you're being dramatic—that's something I dealt with a lot on sets growing up.

So what is it like to be in pain, not be taken seriously by the people you work with, and then have to go act?

Hard. It's very hard. It's almost like you forget that you do have to then go be on camera. I felt like so much of my experience was about trying to manage and push down my own pain, push down on my own experience and be like, “I'll deal with this later.”

How did you get the courage to talk to your employer about your endometriosis? What were those conversations like?

Luckily, on the television show I'm on now, Good Girls, we have a lot of the same crew that I worked with on Parenthood, so they've known me for a long time, and the set is just so wonderfully kind and caring. And I think it comes down from the top. Jenna Bans is our showrunner and is just this brilliant woman who is so smart and sharp and focused, but also so sensitive, so aware.

I sort of realized, knowledge is power, right? So the more that I know what's going on, even if it's “I don't know what it's going to be,” at least I could communicate that to them. And it took me realizing the severity of what I had and making that okay. It took me going, “Wow, this is a real disorder. It really affects me. It's a huge part of who I am, and if you want to work with me, you have to at least know this about me and try to acknowledge it.”

I really started communicating with my line producer Dylan Massin, who came with us from Parenthood to Good Girls. Once I had officially been diagnosed, I felt more confident in saying, “Hey, this is what I have, this is what it is. It is serious, it is real, and it’s going to be a challenge for me to deal with.” It was a very frank and open conversation, and he was so kind and considerate and promised to remain aware. Then, when I went to his office a week or so later, and I saw that he had written a little C in red on certain days of every month and figured out it stood for cycle, so he could try to plan and give me a day off or a light day. That was meaningful.

What are some of the ways that endometriosis affects your work?

Whitman: I literally can't schedule things in advance. Like, it's almost a joke. And even now—I've had surgery and I'm much better—I still can't do it. Because the symptoms that I still have from endometriosis pop up out of nowhere. And even though it's not the horrible pain anymore, it's insane bloating, nausea, extreme fatigue, super-nervous panic attacks. And it makes it impossible because my cycle is all over the place. It's never regular.

It’s so frustrating because it makes you appear unreliable. People think you're just flaky. People think you're impossible to get ahold of, that you're not good at your job, you're not professional. I've had to sort of learn how to set up boundaries, which are probably good to have in one's career anyway.

Can you talk more about the importance of setting boundaries?

Asking for what you need is hard in this world, but I feel that dealing with this disorder has really given me an understanding of how important that is to do that and the courage to do so because I realize how much truer and more authentic of a life I'm living. And I've noticed the people around me have really appreciated it. People like it when you can say what you're capable of doing or not doing, and if they don't like it, then fuck them. Sorry, but come on.

Have you had to make career sacrifices because of your endometriosis?

Yes. One example: I was offered a great role on a very wonderful television show I admire very much, but it was scheduled to shoot right before I got my laparoscopic surgery and right in the middle of when my cycle was supposed to start. My cycles had gotten so bad that I was throwing up and writhing around in pain for days, every single time, before it even started. I knew there was no way I could get on a plane to Canada and try to rush through makeup tests and wardrobe fittings and remember my lines and have enough energy to be the professional I wanted to be. I was so desperately ill and unable to even stand upright. It killed me, but I had to let it go. I knew it wasn’t the right course of action for myself, or for the project.

Top level, how has endometriosis impacted your career?

Sometimes you look back and say, “I wonder if I hadn't had this disorder, would I be further along? Would I have been able to go to that industry party and have that person see me and say, 'Hey, maybe you should be in my movie?' Could I have done more publicity stuff? Worked harder? Could I have gone to more auditions? Could I have powered through even more stuff?”

I think it's easy in general to look back and wish or wonder that maybe something was different, but I have to say standing where I am today, I would not have done anything differently. And I think if anything, it showed me how hard I am working and how it is difficult to push through all these things with endometriosis. And I'm almost proud of what I did with this disorder that's been sort of holding me back in a way I didn't even know. I'm amazed that I've been able to continue to work and do the thing that I love to do more than anything in the world.

What advice would you give to other women who are struggling with endometriosis?

My main advice is to seek information and seek support. There are support groups out there—for me, it was really beneficial to even just meet one, two, three people who were dealing with something as extreme as what I was going through. Because it really can be isolating and you can feel really lonely. But the most important thing to know is you're absolutely not alone.

Also, really find an endometriosis specialist if you can. [Editor’s note: Whitman sees Iris Kerin Orbuch, M.D., in Los Angeles.] For me, having the information said to me face-to-face, it felt already like it cleared up so much of the panic that I was holding on to. And knowing that there is a plan for managing the pain, knowing that there is a surgery that really helps if it's done correctly, knowing there are lifestyle choices that can really assist you in managing this pain—those things were what really set me free. Even just the knowledge of them. I also highly recommend watching that documentary Endo What? and reading the book Beating Endo: How to Reclaim Your Life From Endometriosis by Dr. Orbuch.

Can you still pursue your dreams with endometriosis?

Hell, yeah, absolutely. I think you can pursue your dreams even more with endometriosis. I think it can make you an unbelievably strong person. And it can make you someone that can't be held back by anything because, I'll tell you, if I can get through those pain waves that I had, I can do absolutely anything.

This conversation has been edited for length and clarity.

Source: Read Full Article