Stacey Philpot expected her life as a newlywed to be full of hot sex and romantic dinners. Instead, it was full of hospital visits and scary diagnoses. The 38-year-old in Gainesville, Virginia, had always been more prone to infections and fatigue than her peers, but she experienced a severe and sudden health decline in the months leading up to and following her wedding.
“I went from working with a personal trainer to literally not being able to run around the block,” says Philpot, who also inexplicably gained 60 pounds after being naturally slender her whole life. Since her wedding in 2010, she has been diagnosed with Lyme disease, rheumatoid arthritis, common variable immune deficiency, interstitial cystitis and other chronic illnesses.
“I’ve never felt like the hottest chick on the block, but I always felt good about who I was; I always felt proud. I felt I knew how to dress myself; how to carry myself,” says Philpot, who blogs about her experiences at ChronicallyWhole.com. “This was the first time in my life I felt like I don’t know who I am.”
[See: 5 Rare Diseases You’ve Never Heard Of (Until Now).]
Having a positive or even neutral body image is a challenge for many people, no matter their physical health status. A 2014 study of 1,893 adults in the U.S. found that up to 31.8 percent of women and 28.4 percent of men are dissatisfied with their bodies, while other research and surveys have found more than 80 percent of women report body dissatisfaction. An international report including children from 43 countries also found that by age 15, 40 percent of girls and 22 percent of boys are dissatisfied with their bodies.
But research suggests people with chronic illnesses are at even greater risk for negative body image perhaps because they may look different from their peers, are limited in what their bodies can do and may follow particular diets that, in some people, can trigger disordered eating behaviors and related body concerns, says Virginia Quick, the interim director of the didactic program in dietetics at Rutgers University, where she studies obesity and eating disorders. “Just having to adhere to that diet can lead to some unwanted or unintentional consequences,” she says.
Not only is negative body image a problem because it raises the risk of eating disorders, depression and anxiety in anyone, for people with chronic illnesses — think multiple sclerosis, irritable bowel syndrome, Crohn’s disease, chronic fatigue syndrome and fibromyalgia — it can be quite dangerous if it interferes with the type of self-care critical for disease management.
“If you have Crohn’s disease and you don’t treat your body well and rest enough and eat properly, you’re going to need surgery, and that has a huge impact on your life,” says Jodi Rubin, a therapist in New York City who specializes in body image issues. “It’s almost like when people have an illness, their back is up against the wall.”
[See: The Eating Disorder Spectrum — From Pregorexia to Drunkorexia.]
Anna Sweeney, a registered dietitian and eating disorder specialist in Concord, Massachusetts, learned that the hard way. When she was first diagnosed with multiple sclerosis at age 15, she didn’t accept it “with a particular amount of grace,” she says. “I fought against it hard; I put myself in positions that were unsafe; I didn’t use walking aids as early as I should have because I had such an idea of what I was supposed to look like and who I was supposed to be.”
She, like Philpot, has since learned to accept her body and to take care of herself — even when she’s in pain or fatigued or frustrated with her body’s declining abilities. “There are days I don’t feel great and I cry and I feel sad … but I don’t get stuck in any one place for too long,” she says. “Even if I’m having a bad body day, I can still prioritize myself; I can still take care of myself and be kind to myself.”
Here’s how she and others say people with chronic illnesses can improve their relationships with their bodies too:
1. Let yourself mourn.
It’s unrealistic — and even ill-advised — to expect to go from a chronic illness diagnosis one day to loving your body the next. “Let yourself be angry and frustrated and upset and disappointed and resentful and whatever else you feel,” Rubin says. “You have to process both. You can’t just be grateful all the time.”
2. Expect ups and downs.
Just because you’ve emerged from an initial mourning period doesn’t mean your relationship with your body will be blissful every day. “I really wish that someone had said that it’s going to be bumpy and that there are ups and downs and it’s a process and I have a lot more control of how I experience it than not,” Sweeney says. “I can’t change the prognosis of my disease, but I can change how I experience it, and that makes me a very powerful being.”
3. Redefine beauty.
Early in Philpot’s marriage, she felt so unlovable and full of baggage that she wanted to pick out new wives for her husband. It wasn’t until she really thought about the times she felt beautiful — for example, when she felt like she was really making a difference in her students’ lives as a teacher or when her husband looked at her in a way that made her feel seen, even if she was in a hospital gown — that she was able to feel worthy of love again. Now, she wouldn’t take her old, more conventionally beautiful self back. “I would rather have her hair and curves, but this woman’s roots go deeper and I love the insight she has into the world,” Philpot says. “She’s a better wife, she’s a better mom and she’s a more well-rounded person.”
4. Challenge comparisons.
Anyone comparing themselves to movie stars or Instagram models is setting themselves for a body image slump. The same — and then some — is true for people with chronic illnesses, who may no longer be able to compare themselves to themselves if they want to stay positive. “Your body goes through so much and so much is a battle other people don’t see,” Philpot says. “Celebrate what your body is doing.”
[See: 7 Ways to Boost Poolside Confidence Without Changing Your Body.]
5. Choose who you surround yourself with wisely.
You don’t have to have a chronic illness to know that being around people who love you for you — not for what you look like — feels good. For young people with chronic illnesses, positive social and family relationships can help protect against body image issues, Quick’s research has found. “One strategy is finding a peer support group of individuals who have the same chronic illness as you,” she says, since it can help to share your thoughts and feelings about what’s going on.
6. Focus on what you have, not what you don’t.
The fact that some of Sweeney’s days are really painful or unproductive or frustrating means the days that aren’t are even sweeter. “I appreciate it when I feel really good,” she says, adding her definition of “really good” has changed as her disease has progressed. Rubin finds that type of resilience and sense of gratefulness often in clients with chronic illnesses. “When people lose what they have,” she says, “they’re able to see more of what they have left.”
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How to Improve Your Body Image When You Have a Chronic Illness originally appeared on usnews.com
