Pulmonary hypertension is a “whole life” condition that can influence everything, from how long your morning shower takes to your social life. Changes to your body, both real and perceived, make for difficult adjustments – practically, intellectually and emotionally.

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.

You may feel isolated, because you can’t get out much or because others don’t understand your disease. Some of the activities that you may have to give up are the very things you 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 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 you feel like you’re “starting over” in a body that feels totally foreign.

Some individuals 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.

Perceived identities

Between all the symptoms, medical equipment and life changes, people diagnosed with PH may experience what one support group leader called “the loss of who they once were.”

From a former cyclist said he didn’t know who he was if he wasn’t an athlete to a young woman who learned that pregnancy can be life-threatening for women with PH, a diagnosis may involve grieving the loss of a perceived identity.

Do you accept who you are?

Keep in mind that self-image isn’t static. Over time, people with the intention of changing the way they think about themselves can do just that. For many living with PH, the answers to this question changes from one day to the next, and the path to a more positive self-image is ongoing.

Here are a few strategies that have helped others with PH reflect and improve their self-image over time. Some also find it helpful to seek out professional counseling.

Improving your body image

A negative self-image can feel more isolating and overwhelming when you can’t put your finger on what you’re feeling and why. By developing a critical awareness of the expectations you feel, it’s easier to recognize your negative thoughts are not direct reflections of reality.

Think about the expectations you encounter throughout your day.

• 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?

Some of us grow up in families or cultures where illness and disability are stigmatized. Without realizing it, we carry the unrealistic expectation that we should feel and look healthy, energetic and upbeat, even when we’re sick.

Accept what you can’t change today

While research has come a long way, PH is still a life-altering disease. Allow yourself to grieve for the dreams and activities you’ve had to give up.

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 fighting unwinnable battles, and you’ll have more energy to look at what you can change tomorrow.

Make positive changes where you can

• 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. One patient told us, “The thing that helped me the most was 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. Just eating less sodium may make you feel better.
• Get plenty of rest. Make sure you’re getting plenty of sleep, and don’t push your body too hard when it’s telling you it needs rest.
• Celebrate your accomplishments. When you reach a personal goal or finish a project, recognize your achievement. Keep a journal of your milestones, take yourself out to dinner, or make an announcement to friends and family.

• Change the way you talk about yourself. If you put yourself down, challenge your negative thoughts by replacing them with compassionate words that don’t reflect unrealistic expectations. For example, on low-energy days, don’t tell friends and family that you are feeling lazy. Instead, use judgment-free language that acknowledges a more basic truth: your body needs rest.
• 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.

Download or order PHA’s Intimacy Guide

Living With PH: A Guide to Intimacy offers information and helpful tips to cope with and overcome the effects of pulmonary hypertension on body image, intimacy issues, dating and long-term relationships. This guide is free to download or can be ordered as a print copy.

Intimacy guide