Coping with PH When Those Close to You Don’t Understand

By Kim Lamon-Loperfido, LMSW, MPH
PHA Patient and Caregiver Services Manager

Living with a chronic illness like PH can be difficult, and feeling misunderstood and unsupported can increase that difficulty. When patients are newly diagnosed, they may try many strategies to help the people in their lives understand.

“It’s very human for anyone to talk a lot about a new diagnosis. But once you’re undergoing treatment and life has settled down a bit, it’s important to downshift the PH talk and not let it be the first thing you discuss with friends and family,” shares Joanne Sperando-Schmidt, a long-term PH support group leader and patient.

However, many find that overcoming the lack of understanding is a long-term project. Just as patients need time to understand and adapt to living with PH, friends and family need time to comprehend what their loved one is going through and to sort out the implications for their lives. The trauma of the illness can evoke feelings of fear, depression, anger and helplessness in all family members.

Joanne continues, “I’ve learned that some people are scared to death of illness, hospitals, etc., so they avoid the subject. Although I’ve lost some friends, my good friends have gathered closer to me.”

Working to Avoid Miscommunication

Working to improve communication can increase understanding, uncover unrealistic expectations and aid in problem solving. Effective communication is about building rapport, understanding and trust. It is intentional, and it comes from a place of empathy. Some ways to improve communication include:

Picking a time when you both are at your best.

Sharing your understanding for the other person’s situation and checking for your part in any miscommunication.

Practicing reflective listening. This involves repeating back a portion of what you have heard to ensure you are understanding what has been shared.

Acknowledging the emotions and feelings that have been shared.

Allowing for silence.

Using “I messages.” For example, “I feel (name an emotion) when (what causes the emotion).” Then finish with what you’d like to see happen. For example, “I feel hurt when you don’t ask for my input. Please let me share my feelings.”

Author Devin Starlanyl suggests putting together a support network of at least five people who can help you meet your practical and emotional needs. This recommendation is helpful for both those living with PH and their caregivers. By having several people to fill various needs such as practical support, companionship and emotional support, no one person gets burnt out.

Letting Go and Prioritizing

It can be helpful to let go of the expectation that friends and family will understand every aspect of living with PH. Some people in your life may not be capable of adapting to the limitations or changes that living with PH may bring about.

However, Bruce Campbell, PhD, creator of the CFIDS and Fibromyalgia Self-Help program, suggests prioritizing relationships, focusing your time on those who are more important or necessary.

“You can offer PH literature, invite them to a PH meeting or local event. Close family can even accompany you to a PH doctor’s appointment to see firsthand what we go through. But when all else fails, my advice is to let go. You cannot force people to be interested or to participate in your illness,” offers Joanne.

Setting Boundaries

By expressing your own understanding of the limits and unpredictability of your illness, you can have an authentic discussion about how you and those who are important to you can move forward. By setting boundaries for what you do or do not share or how and when you socialize, you can protect your emotional and physical energy levels.

Suggested Readings

Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why by Lisa Copen

Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness by Paul J. Donoghue and Mary Elizabeth Siegel

You Don’t Look Sick!, Second Edition: Living Well with Chronic Invisible Illness by Joy Sela



This article was first published in Pathlight Spring 2014.