PHA Pathlight Spring 2014 - (Page 6)
C o p i n g w i t h P H W h e n T h o s e C l o s e t o Yo u D o n ' t U n d e r s t a n d
iving 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
"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
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
Practicing reflective listening. This involves repeating
back a portion of what you have heard to ensure you
are understanding what has been shared.
Allowing for silence.
Acknowledging the emotions and feelings that have
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.
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
* Why Can't I Make People Understand? Discovering the
Validation Those with Chronic Illness Seek and Why by
* Sick and Tired of Feeling Sick and Tired: Living with
Invisible Chronic Illness by Paul J. Donoghue and Mary
* You Don't Look Sick!, Second Edition: Living Well with
Chronic Invisible Illness by Joy Sela
For more information to help you cope with PH, visit
By Kim Lamon-Loperfido, LMSW, MPH
PHA Patient & Caregiver Services Manager
PATHLIGHT SPRING 2014
Table of Contents for the Digital Edition of PHA Pathlight Spring 2014
Coping with PH
Ask a PH Specialist
Advancing the Cause
PHA Pathlight Spring 2014