Maintaining a Positive Self-Image


“Ten years ago I was hiking, raising a son and working full-time. I held myself to a high standard, but when PH hit hard and heavy I couldn’t meet that standard any longer. I speak from experience when I tell you that when your body goes to hell in a hand basket, it can easily take the rest of you with it.”


Richard Smith and his daughter Dawn Smith pause for a photo before visiting their Members of Congress at PHA’s Congressional Luncheon.


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What to Expect

Pulmonary hypertension is a “whole life” condition that can influence everything, from how long it takes you to shower in the morning to your social life. Changes to your body, both real and perceived, can be difficult to adjust to, practically, intellectually and emotionally. In a society that celebrates youth, fitness and health, it can be challenging for people living with a chronic disease like PH to figure out how they fit in.

PH and Self-Image

Our self-image is made up of all the ideas we have about ourselves, including how we look, how intelligent we are, how connected we feel to those around us, and how hopeful we feel about the future. Being diagnosed with PH can affect every aspect of an individual’s self-image. Many patients describe feeling isolated, either because they can’t get out much or because strangers, friends and family don’t understand their disease. One young woman described how being house-bound has limited her social circle with far-reaching effects: “I used to know lots of people my age at church but now no one is around. They are all either married, have kids, or moved away. Their lives are full of adventure but mine stays here.”

Others find it difficult to maintain a positive self-image with so many of their old “feel good” activities and plans for the future suddenly stripped away. Tiffany said, “Everything I do, my efforts and ability are limited. Cooking, cleaning, working, shopping and decorating my home are all things I love and need to do to enjoy my life. I cannot do these, or I’m limited in how I can do them.” Some of the activities that PH patients have to give up are the very things they did to maintain a healthy self-image before diagnosis, such as running, dancing or staying up late chatting with friends and family. Cut off from self-affirming activities, it can be difficult to reestablish a positive sense of self after diagnosis.

PH and Body-Image

Many PH patients also struggle with one central aspect of self-image: body-image. Physical symptoms of PH and associated conditions, including chronic breathlessness, low energy, weight fluctuation, fluid retention, skin rashes, facial flushing and sweats, can make patients feel like they’re “starting over” in a body that feels totally foreign. Teresa told us, “It’s like a body transplant! You’re the same person inside, in terms of personality, interests, hobbies. But you’re presented with a body that doesn’t do those things anymore.”

Some patients on supplementary oxygen and intravenous medication find that the discomfort and conspicuous nature of their medical devices can take a toll on their self-confidence. One woman with a Flolan pump confided, “People stare at me and my self-esteem has been lowered. I cry all the time.” Others report feeling self-conscious even in front of their spouses, particularly in the bedroom. A woman in her late 20s described the “horror” of having to go on a date for the first time with an oxygen tank in tow.

Loss of Perceived Identities

Woman walking with oxygen

Between all the symptoms, medical equipment and life changes, people diagnosed with PH often find themselves experiencing what one support group leader called “the loss of who they once were.” A 42-year-old former cyclist told us that he didn’t know who he was if he wasn’t an athlete. A 65-year-old mother of three told us that after she was diagnosed she thought she’d “never feel like a woman again.” After being told that pregnancy can be life-threatening for women with PH, one young woman was surprised to find herself grieving the loss of a “future mother” identity she didn’t realize she was holding onto. Loss of perceived identities is just one more way PH can alter your self-image.

Yet it’s important to keep in mind that self-image isn’t static. Over time, people with the intention of changing the way they think about themselves are capable of doing just that. According to Dr. John Wynn, medical director in the Department of Psycho-oncology at Swedish Cancer Institute of Swedish Medical Center, “A healthy body-image is a sense of one’s physical self that feels easy and acceptable. What it comes down to is how do you think of yourself and do you accept who you are?” For many living with PH, the answers to these questions change from one day to the next, and the path to a more positive self-image is ongoing.

Adapting and Moving Forward

While everyone deals with changes to their self-worth and body-image differently, there are strategies that have helped others with PH reflect and improve upon their self-image over time. Here are a few approaches to get you started. Some also find it helpful to seek out professional counseling to work through some of these issues. Talk to your healthcare team about finding a therapist in your area.

Demystify Your Thinking

A negative self-image can feel the most isolating and overwhelming when you can’t put your finger on what you’re feeling and why. Without an awareness of the situations and circumstances that trigger negative thoughts, it’s easy to believe that you’re the only one who feels the way you do. By developing a critical awareness of the expectations you feel, however, it’s easier to recognize that your negative thoughts are just that — thoughts — and not direct reflections of reality.

Think about the expectations you encounter as you move through your day. For example, what expectations do you feel as a result of television, magazines and movies? What images do you see of people with chronic illness in the media, and how do these make you feel? What expectations do you feel because of your family or background? Many people grow up in families or cultures where illness and disability are stigmatized. Sometimes without realizing it, these individuals carry around the unrealistic expectation that they should feel and look healthy, energetic and upbeat at all times, even when they’re sick.

One way to develop critical awareness of your expectations is to make a list of all the elements that make up your self-image (the picture you have in your mind of your personality, your body, your ability to connect with others, etc.). How has your thinking in each of these areas changed since you were diagnosed? When do you feel the most vulnerable? When do you feel the most confident? Look for patterns. One PH patient, Lisa, found that she felt the worst about herself when she thought she was letting her family down because of her illness, like when they dropped her daughter off at college and she couldn’t help move boxes into the dorm. This simple act of recognition helped her see that she was unfairly clinging to expectations that were no longer attainable. It also helped her work up the courage to talk to her husband and daughter about how she felt in these situations.

By talking to her family, Lisa realized that when she couldn’t move boxes, mow the lawn, or cook a meal, she felt like a bad mother and wife. She was experiencing the “loss of who she once was,” a mother who showed her love for her family through actions. By identifying the root of the problem, she was able to start expressing her love in ways that she was capable of. She started spending lots of time with her husband and daughter when she was feeling well, folding laundry and doing other sedentary chores, and being vocal about how much she appreciated their help. Demystifying her thinking helped Lisa distinguish reality (she couldn’t move boxes) from her perception of reality (she was a bad mother). This helped her begin to accept her limitations without putting herself down.

Accept What You Can’t Change Today

While research has come a long way in the past two decades, PH is still a life-altering disease. Allow yourself to grieve for the dreams and activities you’ve had to give up. For some, accepting limitations and life changes can take a long time. Teresa told us, “My acceptance has been in fits and starts. It was prolonged grief for me because I didn’t know what was wrong with me at first. I felt guilt. I thought I was lazy. I kept thinking, ‘This isn’t who I am.’” Yet over time, Teresa got better at differentiating between things she could change and things that she couldn’t. She said, “At the end of the day, PAH is beyond my control. But how I choose to live with it is definitely within my control.”

Keep in mind that acceptance doesn’t mean giving up. By accepting what you absolutely can’t change today, you’re less likely to tire yourself out fighting unwinnable battles, and you’ll be left with more energy to take a fresh look at what you can change tomorrow. According to Diane, life with PH “is a balancing act of knowing what you can and cannot do. Each day is different.”

Make Positive Changes Where You Can

The Race 2 Cure PH: Taylor Caffrey Memorial 5K Walk/Run - Anaheim Hills, Calif., June 2010Once you’ve accepted what you can’t change, it gets easier to zero in on areas of your life where you are willing and able to take control. Here are some suggestions for implementing positive changes to improve your self-image:

  • Call in reinforcements. Surround yourself with friends and family who make you feel good about yourself. And don’t limit yourself to two-legged friends either. One patient told us, “The thing that helped me the most was going to the humane society and getting a dog. My dog loved everything about me. He saved my life.”
  • Be good to your body. Rather than focusing on the body you think you should have, focus on the body you do have. One patient told us, “When I was stuck on how fat I was, it didn’t matter what I ate because I was already overweight. What helped me was when I started putting my health at the center of every decision I made. Instead of stuffing potato chips down my throat, I started eating less sodium and feeling better.” Work with your PH team to develop a nutrition plan, make sure you’re getting plenty of sleep, and don’t push your body too hard when it’s telling you it needs rest.
  • Stay active. Talk to your PH doctor about developing an exercise plan. Low-level aerobic exercise, even just a daily stroll around your neighborhood, can be good for your body and mind. One patient started by walking out the back door to the end of her alley and back. Over the course of several months, she extended the walk bit by bit, and today she walks three miles a day. She said, “That was the thing that helped me cope emotionally with my body. Being out in the fresh air, moving my body, having my muscles respond, all these things helped changed my body. Everything happened together. I centered myself."
  • Celebrate your accomplishments. When you reach a personal goal or finish a project, take the time to recognize your achievement. If you like to write or scrapbook, consider keeping a journal of your milestones. You could take yourself out to dinner, take pictures that remind you of the accomplishment, or make an announcement to friends and family. Finding ways to formally recognize your successes can help you build new, positive identities post-diagnosis.
  • Change the way you talk about yourself. If you find that you’re putting yourself down a lot (“What’s the matter with me?” or “I’m hopeless!”), challenge your negative thoughts by replacing them with kind words that don’t reflect unrealistic expectations. For example, on low-energy days, many PH patients will tell friends and family that they are feeling lazy. Lazy is a loaded word that implies that you should be capable of doing more. Instead, try using judgment-free language that acknowledges a more basic truth: your body needs rest. Using your feelings and needs as guideposts can be a helpful way of translating negative self-talk into language that’s more compassionate and realistic. Here are some more examples:
Negative self-talk Realistic self-talk
I'm too fat to go out. What will people at the party think? My body has been through a lot in the past year. My friends know how much I've been through and accept me as I am.
I'm a terrible person because I can't plan my mother's retirement party. I feel badly that I can't help out as much as I'd like because of my PH, but I need more time to rest these days.
No one will ever want to date me with this tube coming out of my chest. I feel self-conscious about my disease and my medication, so I'm going to take this dating thing one day at a time. I can hold out for the kind of person who will make me feel at ease, PH and all.

 

  • Stay in the moment. Your self-image, like life with PH, will have ups and downs. Your body, your health status, your outlook: none of these will stay the same forever. It can be helpful to think about every day as a new beginning, and appreciate each moment for what it is. According to Dr. Tiffany Stewart of the Body Image Project, “The more we hold on to what should be, the less we can see what is and what can be. Opening up to this possibility is a shift in perspective and the essence of acceptance…acceptance of constant change. It takes realizing that the journey is about the journey, and not about certain preconceived expectations and outcomes. When we are able to cultivate this vision for ourselves, we unlock our own ability to let go of judgment and find a genuine appreciation, not just of the body, but of the whole person.”

Additional Resources

Information from PHA

Books and Web Links

  • Body Image Resources from the Our Bodies, Ourselves Health Resource Center
  • "Fostering a Positive Self-Image," from the Cleveland Clinic
  • Good Days, Bad Days: The Self in Chronic Illness and Time, by K. Charmaz (Rutgers University Press, 1991)
  • The Chronic Illness Experience: Embracing the Imperfect Life, by Cheri Register (Hazelton, 1999)

Support Resources

PHA is grateful to PH patient and former social worker Teresa Asselin-Hayes for her input and review, and to all the PH patients who contributed their experiences to make this resource possible. PH medical review by Debra Hudock, RN, MSN, CNS, of Akron General Medical Center in Akron, Ohio.

To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
Last reviewed: March 2012

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.