Tag Archives: chronic illness and disability

My life as a grad student with a chronic illness

APAGS recently spoke with Stacey Feuer, a fourth-year clinical psychology doctoral student, about her experiences of living for the past 17 years with Gaucher disease, an often invisible chronic, genetic illness characterized by its numerous effects on the body’s organs and systems.

Stacey Feuer.

APAGS: Stacey, please tell us a little about yourself.  

SF: I am currently at NOVA Southeastern University in South Florida and my focus is on health psychology, specifically the psychological impact of people living with chronic medical illnesses. Next month, I will be working with people living with HIV/AIDS during a service trip to Swaziland in Africa. I am excited to present a paper at the annual APA convention in August with Dr. Barry Nierenberg and fellow student Sarah Cooper on an integrative model we are developing to evaluate and treat medical patients. I am also involved in other research projects — one involving cognitive contributors to pain, and another on applying positive psychology to individuals living with spinal cord injury. My future plans are to continue working with people living with chronic medical illnesses as both a therapist and advocate.

APAGS: What are some of the challenges of having Gaucher as a grad student?

SF: It has been challenging in many ways. Many people, including faculty members, have difficulty understanding how this illness has impacted me because even at my sickest points I have looked perfectly healthy from the outside. As with any chronic illness that has exacerbations and remissions, it is sometimes difficult to make short- and long-term commitments with friends when your health may change from one day to the next. I have been very fortunate, however, to have some wonderful people in my life.

Even at my sickest points I looked perfectly healthy from the outside.

Returning to school as a full-time student has only been possible because of certain accommodations. This has been essential to keeping up with all of my required coursework and commitments by helping to reserve my energy and pain levels as much as possible. Since my treatments take approximately half a day at a doctor’s office, it has been necessary for me to not schedule other commitments on those days. I have learned to tell others that I am simply unavailable.

APAGS: Have any positives come from this experience?

SF: The biggest positive has been the opportunity to use my experiences to help others in similar circumstances. Isolation is one of the biggest contributing factors to depression and anxiety in people living with chronic illnesses. It is very rewarding to be able to have a positive impact on the lives of individuals who are living with ongoing negative circumstances.

It is very rewarding to have a positive impact on individuals living with ongoing negative circumstances.

APAGS: How has Gaucher shaped your decision to study psychology?

SF: Being diagnosed with Gaucher 17 years ago has had a huge impact on my decision to pursue my doctorate in clinical psychology. In my twenties, there were several years in which I was very sick, requiring several surgeries and being essentially bed-bound. During this time, I was never able to find a therapist who understood chronic medical illness. I eventually went back to school for my master’s degree in leadership development and healthcare; however, I realized that I wanted to have a more personal impact in the lives of people. This realization encouraged me to pursue my doctorate in clinical psychology and to concentrate on health psychology.

APAGS: How did Gaucher inform your decision to find the right graduate program for you?

SF: I chose NOVA because it met two basic criteria (besides academic ones) — the warm weather and proximity to a Gaucher specialist. Due to the Gaucher, I have significant bone damage. These bone issues are the primary source of my chronic pain and are exacerbated by cold, damp weather. In addition, I knew there was a Gaucher specialist 30 minutes from Nova. Most doctors are unfamiliar with rare diseases and this can make communicating with them about your needs very difficult. Knowing that I would be able to have regular access to someone very familiar with Gaucher was key.

APAGS: Thank you, Stacey. Finally, is there something you want to pass on to fellow graduate students who may have similar health challenges?

SF: I have met many students in my program who are also balancing a demanding doctoral program with chronic medical problems. We have been able to support each other most importantly by reducing that sense of isolation and validating each other’s experiences. We also swap “war stories” and share tips on how to get through the program (like discussing which professors are most likely to work with you), and remind each other to take care of ourselves.

We support each other by reducing that sense of isolation and validating each other’s experiences. We swap “war stories” and remind each other to take care of ourselves.

Recently, I decided to take an extra year to complete my coursework due to my health and general burnout. I learned that several others have made this same decision for similar reasons. There can be so much pressure to complete these programs in their prescribed timelines which often do not work for someone with ongoing health issues. I would strongly encourage other graduate students with similar health challenges to seek out peers, faculty and staff with whom they can talk about their challenges and who will help them complete their education in a way that best fits their situation. Having that support is so important and can make all the difference.

Disability and diversity in graduate school training

Why is it that this population is often left off the page? Where is the training in disability competencies?

According to the United States Census Bureau, the number of people with disabilities in the United States is 56.7 million, or 18.6% of the population. That is more than the percentage identifying as Hispanic or Latino (16.9%) and as Black or African-American (13.1%), and may be an under-count because reporting disability on a census survey is tricky.

Whereas disability rates are high, chronic disease rates are higher. The Centers for Disease Control and Prevention estimate that about half of all US adults (or 117 million people) have one or more chronic health conditions like heart disease, obesity, arthritis, diabetes, or cancer — and 25% have two or more such conditions.

Suffice to say, a lot of people with chronic illness and disability (CID) live in the US and make up its largest minority group. So why is it that in our discussions of multiculturalism, this population is often left off the page? Where is the training in disability competencies?

Disability is no longer the realm of the medical doctors. Regardless of which applied arm of the field you call home, whether it be health, rehabilitation, clinical,  counseling, or school psychology, your clients will be people with disabilities. In fact, depending on where you are in the country, it is more likely you will work more with this population than any other minority group.

If you’re moved to learn more, start by asking yourself where you fall on the ability continuum, and what privileges this affords you. It was my realization of the privilege I held for my ability — more so than all other privileged identities I possess — that drove my passion for disability and rehabilitation competencies.  One way that I develop these competencies outside of my program is through volunteer service in the community and at conferences and trainings. (On a side note, I believe disability advocates still have work to do to move CID closer to the fore even in those arenas that celebrate diversity, such as the biennial National Multicultural Conference and Summit, an excellent event held next January in Atlanta).

Recently, discussions and publications addressing intersectionality issues have incorporated disability a bit more, which is a great thing. At the same time, it is possible that the unique cultural aspects and experiences of individuals with CID get overlooked. Now is the time to advance the multicultural discussion to include disability as a diverse and cultural experience.

Please check out this great training video with Drs. Linda Mona and Julie Williams. Parts two and three of the video can be found — along with a host of other resources — at the APA Disability Issues Office webpage.

Disability as a Diversity Variable: A Call to Action within Psychology

I look forward to hearing your thoughts on the topic and any experiences you may have had in disability competency training.

Philip Keck

Editor’s note: Phillip Keck is a Counseling Psychology doctoral student at Ball State University and the APAGS liaison to the APA Committee on Disability Issues in Psychology.