Shock & Awesome
Actress Elizabeth Perkins spent more than a decade feeling constantly run down—and having doctor after doctor tell her there was absolutely nothing wrong. Then, in 2005, at the age of 44, she finally learned that she had type 1 diabetes. Diagnosed while filming the first season of her critically acclaimed Showtime series Weeds—an instant cult smash—she initially struggled to accept her illness, hiding her disease from coworkers and giving herself insulin injections on the sly, alone in her on-set trailer.
Today, Perkins has come a long way, both in getting a handle on her diabetes and in her much-admired turn as Celia Hodes—Weeds' resident acid-tongued tart of a suburban housewife, whose best friend is the neighborhood drug dealer—which has earned her two best supporting actress Emmy nominations in the past two years. This fall, on hiatus from the show and taking some much-needed "me time" to putter around the garden and helm carpool, the blunt, charismatic 47-year-old mother of four spoke about handling diabetes in Hollywood, why she can't wait to get an insulin pump, and how her diagnosis ended up changing her life for the better.
When did you start feeling ill, and how were you finally diagnosed?
Believe it or not, I hadn't really felt well since I had my daughter—who just turned 16. I had a lot of pain, I always felt run down, thirsty, but none of my blood work showed anything except slightly elevated glucose levels. It got to the point where I thought I had some sort of psychosomatic illness. I started seeing a therapist because I'd had a series of endocrinologists who all said "there's nothing wrong with you."
Finally I agreed to have a hysterectomy [because of previously diagnosed endometriosis], and it wasn't until we did the preliminary workup and I had a blood glucose level of 690 that somebody said "Oh, you know what, you have diabetes." Looking back on it, I don't want to be bitter and say "Hey, you know, I exhibited some high glucose levels at different points, but nobody took it seriously." [But] the more I've learned about latent autoimmune diabetes and diabetes in middle age, if you present any kind of high glucose level, you should be monitored extensively, and that didn't happen. And because I was so misinformed, it didn't send an alarm to me.
Born: November 18, 1960, Queens, New York; raised in Vermont
Neil Simon's Brighton
Beach Memoirs (1984)
About Last Night... (1986)
Family: Married with 1 daughter and 3 stepsons
Tell me about being diagnosed during your first season on Weeds.
I felt completely overwhelmed that first year on the show, and I didn't tell anybody I had diabetes. All of a sudden I was in my trailer at work, testing my glucose, and shooting myself up, and I was really scared and felt very alone and completely in over my head. And it wasn't until about 6 months later that I thought, "Now why did I do that?" I guess I felt like it was going to hurt my career somehow, like suddenly I was going to become the sick person, uninsurable.
There was the fear of, "Oh well, that's why she doesn't look good, that's why she's tired, that's why she has to take breaks," and I didn't want that stigma, and it took me a good year and a half to embrace this and say, proudly, "I'm diabetic, and I'm in control of my disease." And there are times when I'm tired, times when I will have a low blood sugar attack, where I just have to stop filming for 5 minutes. Finally, I just came clean with everybody and said, "Look, this is what I need—14-, 16-hour days aren't going to work for me." [In the end], the reaction was unbelievably generous and understanding, but you don't know that until you march down that road, and there's a lot of fear about it.
What's your current treatment regimen?
Eating is the number one way I manage my diabetes. I've actually gotten my meals delivered for the past couple of months, because when I'm on the set, I don't eat as well as I want to, and then when I'm on my hiatus, it's full-on eating the best possible diet I can.
I do Humalog, I do Levemir, and I'm looking forward to lowering the amounts of both. I'm gearing toward the pump, which will happen probably in the next two months, which I'm really excited about. I've been absolutely petrified by the pump. I don't know [why], I think it's a psychological thing—it seems permanent—I'm thinking to myself, "I'm an actress, where am I going to wear the pump, what am I going to do with the pump? I'll have a shunt in my body." So I've been resistant, which is idiotic, because it will actually help me deal with a lot of the complications and definitely keep me more stable.
I'm assuming that you were already eating pretty well when you were diagnosed, given the pressure to be thin and fit in Hollywood. Was the transition to your new diet really that hard?
I was already eating "healthy," [but] what may be a [typical] healthy diet may not necessarily be a healthy diet for a diabetic, and that's been something that I've really had to learn. The best way to manage it for me is I keep a carb-counting book in my car, in my office, in my purse, I have one at home, so I always know what I'm eating.
What about exercise?
I exercise regularly, and for me that's three times a week. I didn't all of a sudden say "OK, now I'm going to exercise every day," because that's unrealistic. But I know that when I don't exercise, it's harder for me to manage my glucose. Right now I'm really into this thing called Nia dance—a free-form dance program that combines yoga, tai chi, and meditation. I also do Pilates. You know, I'm 47 this year, so I'm not into going to the gym and meeting with a trainer; I want something that serves my mind as much as it serves my body.
What's the hardest part of managing your condition?
The consistency, because there are times where you're just like, "I don't want to be a diabetic, I just want to eat that hot fudge sundae," and that's really hard. And I do know some diabetics who say "I'm going to eat the hot fudge sundae, and I'll just inject 20 units of insulin," and that's horrible, it's not a good thing to get into, but you know, you also have to cut yourself some slack and say "I'm dealing with a disease, and it's very limiting sometimes." I know I went through a period of accepting that, and I know there were times in the early days of it where I would just pretend it wasn't there.
Did your diabetes experience inform your acting when your character on Weeds was diagnosed with breast cancer?
Absolutely. There was such a dark alone time in my trailer that first year where I was testing my blood, learning how to draw syringes, and injecting myself, unbeknownst to everybody around me, that tended to give me very much of an isolated, hollow feeling. And I think that definitely translated into my character: I was just sort of out on a limb, on my own, and there was not going to be anybody to save me except myself. I don't know if that worked for my character [laughs], I think it did on some levels, but it was definitely a scary alone time that you can't really share with anybody because they're not going through it, and you're just sort of out there on your own.
How are you feeling now?
I'm actually a happier person than I was before I was diagnosed. I have a much greater perspective on the world around me and what's important.
Once you start looking at life that way, you live every day to a much fuller extent—you appreciate your kids more, appreciate your husband more, appreciate your career more, your friends, your family—so on that level, diabetes has been good to me. And I try and remember that every time I get into the bad head frame of "Oh, poor me, I have diabetes."
How has your life changed, practically speaking?
Well, I had to really knuckle down and pay attention to myself, which was also another plus. I really learned to listen to my body and to know what I needed. And there are times I need to rest, and before I never allowed myself to do that. [Now] I take all the time I want. I mean, it wasn't until I was diagnosed and really accepted it that I allowed myself to say, "I'm going to stop now."
You know, if we're not fit, our families can't be fit. I remember times when the kids were younger, where I was like, "I'm absolutely exhausted but I just have to keep going," and I don't do that anymore.
For example, now, when I'm on hiatus, I don't feel this drive to be like, "Well, I need to get a job!" I actually allow myself things like going to sit in the backyard and read a book, which is brand new for me.
Are you involved in any advocacy work?
No, not yet but I'd love to. That's sort of the next step. Because now that I've fully embraced [my diabetes], I feel very proud to talk about it and to share my struggles with other people. Otherwise, you're in your trailer with the shades pulled down, testing your blood and injecting, and that's a really lonely place to be. Nobody wants to be there.
Carolyn Butler has written for the Washington Post and the New York Times, among other publications.