“Real listening is a willingness to let the other person change you.  When I’m willing to let them change me, something happens between us that’s more interesting than a pair of dueling monologues.”  

— Alan Alda

As a practicing psychologist specializing in supporting the needs of patients affected by rare disease, I often encounter patients who feel unheard or misunderstood by others. 

 In short, I often hear from my clients, “They just don’t get it.”

When patients feel unheard, feelings of disconnection, isolation, and mistrust can result. So in addition to the medical uncertainties and symptoms associated with the rare disease itself, patients may carry an additional layer of emotionally draining experiences interacting with the very people from whom they wish to receive support.

When rare disease patients feel unheard or misunderstood by friends, extended family members, health care professionals, or industry partners, why and how does this happen?  

In my experience, there are four reasons this unfortunate phenomenon occurs:

The person listening to the rare disease patient is:

1. Too far away in proximity to the day-to-day experiences of the patient to fully understand the patient’s challenges;
During the 26 years my son, Jack, lived with Spinal Muscular Atrophy, I sensed when he felt misunderstood or unheard.  Sometimes, as a parent, I felt the same way Jack did.  Over the years, I came to realize that it’s unfair to expect others to fully understand what it’s like to live with a rare disease unless you’ve lived with a rare disease.  In short, the farther away we are from the day-to-day experiences of the patient, the harder it is for us to understand the complicated mix of challenges, dreams, frustrations, and hopes that come with the territory in rare disease.

2. Looking through the lens of self rather than carefully listening and looking through the lens of the other person;
When I meet with patients, families, and communities affected by rare disease, I often remind myself that my own experience and the ways in which I view my experience, are mine and not theirs.  The lens through which we look is colored by our own personal and professional experiences, our values, our priorities, and our roles.  The lens through which the client looks is always different than our own. As a psychologist, I believe the most important part of my job is to listen very carefully, to put my feet in my client’s shoes (and in some cases, in their wheelchairs), and to learn.  Only then can I possibly have something of value to offer to my clients.

3. Knowledgeable about other patient’s experiences with the rare disease and assuming this patient’s experience is similar or the same.
As we all know, the needs of every rare disease patient are different. While there are commonalities across and between our rare patients and family experiences, it’s important that we remind ourselves that no two patients have the same journey, medically or emotionally.  When well-intended helping professionals assume (or, unfortunately, in some cases) even dictate to patients what the patient needs based on prior experiences with other patients, they may miss the heart of the matter, which are the unique needs and wishes of the person with them now.

4. The person is working within a system that places its highest priorities on something other than the patient’s priorities.
As the father of a medically-fragile rare disease patient for 26 years, my highest priority was keeping my son safe.  Beyond safety, my highest priorities were Jack’s happiness, independence, and the opportunity to interact meaningfully with others and with the world, however long he would be with us.  I mistakenly assumed that everyone who reached out to help us with Jack would be laser-focused on these same priorities.  Early on, I remember feeling a bit confused and very disillusioned when I realized not everyone who was involved in my son’s life was motivated by the same priorities.  Other priorities – financial, legal, administrative, insurance – often intruded upon or distracted professionals from focusing on what was important to us as we cared for Jack.

In short, listening goes a long way.  

Yes, listening to the “patient voice” should be required of any person who works with our rare patients and communities.  Yes, a “patient-centric” approach is the only way to put the needs of the patient first.  Yes, “patient engagement” is required to engage meaningfully with patients.

But we can only truly hear a patient’s voice if we listen closely.

We can only truly hear a patient’s voice if we listen without judgement.

We can only truly hear a patient’s voice if we genuinely care about his or her well-being.

We can only truly hear a patient’s voice if we do not bring preconceived ideas or solutions to the conversation.

And we can only truly hear a patient’s voice if we work towards removing any possible systemic obstacles while seeking what is truly best for the patient and family.

As simple as it sounds, listening closely to our rare disease patients and family members is not easy to do.  But in my experience, being heard and understood is at the heart of what our patients and families affected by rare disease need the most.  Having raised a son with SMA who lived to the age of 26, I can tell you that it only took a few seconds of a conversation for me  to figure out who truly cared about my son.  In future articles, I look forward to providing additional perspective and direction on how best to support and respond to the unique psychosocial needs of our rare patients, family members and communities.

We are all in this together.

More from Dr. Al

Keepin’ It Rare: Let’s Talk Therapy with Dr. Al Freedman

About Bionews

BioNews is a health media company focused on rare diseases and rare patient experiences. BioNews provides an insider’s view into disease and treatment news, condition management information, and community across more than 60+ chronic and rare diseases. A fierce champion of the rare voice, BioNews content is designed to reach, engage, and elevate even the smallest patient populations.