Overview

In this module you can learn about the military experiences, health care challenges, and everyday lives of Veterans with Gulf War Illness (GWI). To develop this module, we interviewed 65 Veterans who served during the 1990-1991 Operations Desert Storm and Desert Shield, 38 of these Veterans had a diagnosis or self-identified as having GWI, their experiences are the main focus of this module. We also spoke with three family caregivers. Stories from the family caregiver and Veterans who did not identify as having GWI are highlighted in the narratives section.

Gulf War Illness, or GWI, is a term used to characterize clusters of medically unexplained symptoms experienced by Veterans of the 1990-1991 Persian Gulf War. Symptoms can include fatigue, pain, cognitive and mood problems, as well as dysfunction of the respiratory, gastrointestinal, and neurological systems. GWI is estimated to affect 175,000 to 250,000 of the 700,000 troops who served during the Persian Gulf War. These interviews were conducted between 2018-2021. Since then, the PACT ACT has brought attention to the consequences of military environmental exposures, including the unique exposures of Gulf Deployed Veterans (PACT 405, GulfVET).

Support and funding for this work was provided by the U.S. Department of Veterans Affairs, Health Services Research & Development (SDR 17-151). The content of this site is solely the responsibility of the authors and does not necessarily represent the official views of the Department of Veterans Affairs. Authors have no relevant conflicts of interest to disclose. This study was approved by the Institutional Review Board at the VA Portland Health Care System (VA/OHSU #17470; VA #3786).

The stories in this module were courageously provided by Gulf War Veterans, and as such, may include descriptions of combat situations, violence, or other experiences that could trigger strong emotional reactions. Please use discretion, and if at any time you need to contact the Veteran crisis line, dial 988 and press 1, or text 838255. This free and confidential service is available 24/7, 365 days a year.

A long-time VA Environmental and Occupational Physician, Dr. Steven Hunt, highlights some important information about GWI and VA Care.

SHOW TEXT VERSION

PRINT TRANSCRIPT

Greetings! My name is Steve Hunt. I am a VA primary care physician and Clinical Professor of Occupational and Environmental Medicine at the University of Washington.

I have been providing care with Gulf War Veterans since shortly after they began returning from their combat deployments in 1991. And, very early on, in ’92 or ‘93, I began seeing Veterans with medically unexplained symptoms that later become known as “Gulf War Illness.” In the early 1990s, I set up a clinic known as the Gulf War Veterans clinic specialized Gulf War Veterans’ Clinic at my VA medical center in Seattle, and a few years after that we began to establish the national centers, the War Related Illness and Injury Study Centers, so that we could begin to promote research and also develop enhanced clinical capabilities to take care of our Gulf War Veterans.

And similar to other symptom-based syndromes such as fibromyalgia and chronic fatigue, Gulf War Illness was and still is often ineffectively evaluated and managed which has caused frustration for our Veterans and clinicians as well. Although progress has been slow and we still don’t completely understand the specific causes of Gulf War Illness and the many ways in which affects our bodies and our health, we have come a long way in developing approaches to providing care that can provide symptomatic relief and improve the functioning and quality of life for Veterans with Gulf War Illness.

This project on Gulf War Illness brings awareness and life to the stories of Veterans with Gulf War Illness. It allows Veterans to understand that their experiences are valued and that they are not alone in their struggle. Within the website, you will find rich descriptions of Veterans’ experience serving in the 1990-1991 Persian Gulf conflict and how their lives and health evolved after that time. Our hope is that this will be a rich source of information as well as a resource to Veterans and their families, clinicians, researchers, and even VA policy makers in better understanding the experiences and needs of our Gulf War Veterans and how we might use the resources and services and benefits available to us to better serve them and their families.

Rodney shares his motivation for participating in this project and highlight the importance of sharing stories.

SHOW TEXT VERSION

PRINT TRANSCRIPT

I think it’s cool. I think it’s cool that you’re taking the time to listen to us. And you know when I’m dead and gone I’d like to think that you know someone might listen and see this story and actually affect the future. You know it’s our history. And we should have done this 50, 60 years ago with the other Veterans.

I mean the World War I and World War II Veterans had horrendous, horrendous problems. And no one ever listened to them. No one ever gave them-- You know wanted to hear their stories. And you know maybe if we, if they, their stories were heard, we wouldn’t have some of the problems we have.

Peter shares his motivation for taking part in this project.

SHOW TEXT VERSION

PRINT TRANSCRIPT

Because if it helps anybody understand what's going on with Gulf War Veterans, it's important. Again, as I've noted multiple times, there's a huge lack of understanding, a huge lack of caring, and a huge lack of commitment to helping my cohort of Veterans. And if somebody down the line hears my words and takes heed, maybe the next generation will get the help that they need instead of having to fight for it.

Experience of Veterans with GWI compared to Gulf War Veterans without GWI

We spoke with 35 Veterans who identified as having GWI or had received a formal diagnosis. In addition, we also spoke with 17 Gulf War Era Veterans who ranged from being generally healthy, to managing other conditions such as tinnitus, traumatic brain injury, diabetes and cancer. Though we did not do a formal comparative analysis, herein we briefly comment on overall similarities and differences in the stores we heard. Among those who were deployed, all were confronted with challenges of being deployed abruptly, feeling ill prepared, and being in harsh environmental conditions while deployed. Upon coming home, most shared a desire for more information about benefits and more rapid connection to VA. Compared to those without GWI, Veterans living with GWI had more difficulty transitioning home because of the onset of symptoms, which affected their ability to work, their relationships, and for some their children. For this subset of Veterans, often these symptoms were met with lack of understanding and dismissal by providers and the healthcare system more broadly.

Regarding health care experiences, the presence of GWI increased the complexity and frequency of the care required to adequately manage the symptoms of GWI. The Veterans not living with GWI, more generally echoed frustrations linked to long waiting times and frequently changing providers, and poor care coordination, with community care. These concerns, however, were amplified among those with GWI.

Many Veterans, with and without GWI, emphasized the importance of self-advocacy and keeping one’s records. Some who did not have GWI wondered why they had not become ill and expressed guilt, knowing that others had become ill. There was an overall sentiment from many GWVs about being a “forgotten” era, and they shared wanting to grow awareness and support for GWVs, especially those with GWI. Finally, all shared their stories with the ultimate goal of helping other Veterans.