Unanswered Questions

Veterans with Gulf War Illness have many unanswered questions that have plagued them for decades. The most commonly posed questions were around military required medications, in-theater health care, and lack of medical communication between the military and VA health care systems. Also prominent was the question around how the many environmental exposures (e.g., depleted uranium, burn pits, other chemical munitions, and poor food and living conditions) during the Gulf War influenced their health. Many feel the Department of Defense, VA, and government are not being fully transparent.

Questions about Effects of Environmental and Military Exposures while Deployed

Veterans shared a wide range of lingering questions about the links between the multiple exposures they experienced while deployed and the development of GWI. Many were still seeking answers to these questions today. We also heard concerns about missing information and lack of transparency on the part of the government.

 

David wonders whether shots he and other Veterans were given in the Gulf have affected their health.

David wonders whether shots he and other Veterans were given in the Gulf have affected their health.

Gender: Male
Birthday: November 1958
Racial or Ethnic Identification: Unknown
Branch of Military: Marine Corps
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When you’re in the military and they tell you you need to give blood or you need to do this, or you need to do that, you really don’t have a choice, basically. You’re going to give the blood. And you normally don’t question what is happening. When I came back, I knew I couldn’t give blood until ‘95 or ‘96, when I first came back. I had to wait four or five years before I could give blood, because of some of the shots that they gave us when we was over there. And that was interesting, to get shots that wasn’t in your medical record. Because they didn’t put them in there. And you don’t know what—you didn’t know what they were giving you, but you had to take it because you were in-country and it was supposed to protect you against nerve agent. And whether it screwed us up or not, I don’t know. I don’t know.

 

Brian wishes that the Army would have been straightforward and honest about harmful exposures.

Brian wishes that the Army would have been straightforward and honest about harmful exposures.

Gender: Male
Birthday: April 1967
Racial or Ethnic Identification: Caucasian
Branch of Military: Army, Air Force, and National Guard
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I've got concerns about what were the, and I’m sure you’ve heard people refer to like pills that they gave us? So what's up with that, and why were we taking them? And I've heard also about being exposed to certain metals while we were out there, whether it be like from coated rounds, because there's certain rounds that they coat with certain materials to penetrate holes and things like that. Apparently, it's not very good for you to be around. I’d just like a more open book. Like, I feel like talking to Vietnam Veterans, for instance, a lot of them didn’t know they were exposed to Agent Orange or didn’t know the harms of it. And a lot of it never got admitted until they were out for 30 years, and then they find out that they had diabetes or certain cancers or asbestos in their lungs or whatever it may be. I just want an open book and just tell me. I mean I signed up for the Army. I did it, so just let me know what you're doing to me in turn.

 

Robert wonders why medical providers didn’t communicate with him about his care while in the service.

Robert wonders why medical providers didn’t communicate with him about his care while in the service.

Gender: Male
Birthday: September 1967
Racial or Ethnic Identification: Caucasian
Branch of Military: Army
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You know, I would like to know the answers to is what was their diag—I know they done tests on me when I was in Desert Storm when I was in the MASH hospital. What the test showed. What kind of medications they gave me and what was the end result? I mean I was filled full of medications and everything and IV fluids and then three weeks, two weeks, somethin’ like that, shipped back to my unit. What was the outcome of it? I mean why. Where was the answer to what was wrong with me? And more about this Desert Storm Syndrome. I mean they had to do—they got it down to a Desert Storm Syndrome but they ain’t really got—you know, what are they gonna give you for it? I don’t know what to take for it. You can’t take a whole bunch of pain meds all the time because that causes more problems than what it’s worth. But my thing is, I’d love to know what their diagnosis was. Why I got so sick and was rushed to a MASH hospital and then they took care of me like I was chemically poisoned with the dang, looked like a biological suit that they come and put you in. They put you in a—I was in my own little separate room away from all the other patients in isolation. Why was I isolated from the rest of the people in the hospital? What made me different from the other two people just a few feet from me? So, that’s my thing. Why was I isolated from everybody else and what was my diagnosis? When I was young, I was scared so I just, you know, took it with a grain of salt thinking they knew what they was doing. But now I’m older and look back on it, you know, what’s the, what was the outcome? Why was I given that stuff? What went on? Why did I need all that?

 

Shawn knows that there are many answers he will never get but is grateful to the War Related Illness and Injury Study Center (WRIISC) for clearing up some questions.

Shawn knows that there are many answers he will never get but is grateful to the War Related Illness and Injury Study Center (WRIISC) for clearing up some questions.

Gender: Male
Birthday: September 1972
Racial or Ethnic Identification: Caucasian
Branch of Military: Air Force
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I can’t emphasize enough how much WRIISC was beneficial. So many questions were answered, or I was given tools to find a lot of the answers. It still seems like they have no idea of whether I’m Gulf War related or not. We'll never know. I know we'll never know what exactly was in my shots because they're gone. And even what they wrote down doesn’t mean what I actually received. If it was bad, it wasn’t written down that they were bad, so there are answers I expect I will never get. But, yeah, I just wish we knew why my nerves do what they do and what's causing what's going on in my head, and I think the nerve stuff is what causes the IBS because it's the overactive stimulation of nerves. And my shoulders and knees I don’t think are related at all to Gulf War, so what's going on with my nerves and what caused it. That's what I’d like to know.

 

Paul found that information about bioenvironmental sampling in his group’s area in the Gulf had been lost.

Paul found that information about bioenvironmental sampling in his group’s area in the Gulf had been lost.

Gender: Male
Birthday: November 1965
Racial or Ethnic Identification:Caucasian
Branch of Military: Army National Guard
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He requested a bio team come in, SGPB I think is there, but they came in, and they did samples of the air, the soil, the water all that. The minute, well not the minute they came in, as soon as they started sampling where we lived, they told us pack up all your stuff. Touch as little as you can. Try not to touch the earth if you don’t have to. Pick up all your stuff and move it, and don’t go back to that area. I have just recently I've sent information to like the, I don't know like the bioenvironmental people for the military overall like those people that control all that stuff. I sent them all this information asking what they’ve done about it, what they know about it? And they did answer me but with a very generic… They basically told me that they were not aware of my specific unit. And I said well how could that be? Because when that sampling team came in, they sampled exactly where we were, and I spoke to them. And I gave them the information, so I don’t understand how you’re not aware of it because they specifically came for us, our location and I directly spoke to them. Somehow that information has been lost.

 

Rodney believes that Gulf War Illness symptoms can be tied to nerve gas, and questions why there hasn’t been more long-term effect testing.

Rodney believes that Gulf War Illness symptoms can be tied to nerve gas, and questions why there hasn’t been more long-term effect testing.

Gender: Male
Birthday: May 1971
Racial or Ethnic Identification: Caucasian
Branch of Military: Marine Corps.
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I still think that—I believe that it’s—the majority of it is nerve gas related. And I mean quit denying that it was—quit denying it. Everyone knows it was you, everyone knows it was there. Stop denying it and—I don't know it’s like they’re trying to protect themselves from admitting it. You know. I don't know. Just- That’s my biggest thing. I mean all the signs point to nerve agent ventilation or some kind of chemical contamination. All the symptoms are there. All the—everything fits that group. So why can't you start looking and seeing instead of trying to prove it’s not. Turn your direction and try to prove that you know—determine if it is. You know. Stop going for the null factor. It’s- I think that’s- I don't know I-I guess that’s what I'm about so I don't know. But you know why after what, it’s almost 30 years are you still so mystified and confused? I mean you would think after this much time there would be some kind of discoveries. And there’s not.

 

Of course when we went through the mine field, the gas. That’s always been a question you know. You know some people are claiming no it wasn’t, but you know others are. There was a Major who, you know he was in the Congressional hearings because of it that was gassed really bad and you know he went through before we did. So that’s always been a question. Why hasn’t there been any kind of test to see if there was nerve gas or long-term effects of nerve gas or any kind of residuals in our bodies? Of course then the oil fire rains. I was in the oil fires long enough that there was an entry in my permanent record book about prolong life in the oil fields while they were on fire. So the government knows there was something bad about it. And you know just the things, the air quality. Yeah that would definitely affect health.

Healthcare Questions

Veterans want answers to their questions around how their experiences in the military and in the Persian Gulf affect their current health care.

Questions related to aging versus GWI

Multiple participants shared that they were unable to differentiate between GWI and reaching middle age and the health changes that come with aging. Greg remarks that “no one can tell the difference between 22 and 23,” but when you’re 63, “every year is huge.”

 

Brian isn’t sure whether his symptoms are attributable to age or to Gulf War Illness.

Brian isn’t sure whether his symptoms are attributable to age or to Gulf War Illness.

Gender: Male
Birthday: April 1967
Racial or Ethnic Identification: Caucasian
Branch of Military: Army, Air Force, and National Guard
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I've got memory issues, I've got joint pain, I've got, almost reads like a book. It's ridiculous. But it's hard for me to attribute that to the Gulf or maybe that to age or that to just general wearing my body out, so it's hard to say.

 

As Jeremy got older, he noticed that other people his age weren’t experiencing the same problems.

As Jeremy got older, he noticed that other people his age weren’t experiencing the same problems.

Gender: Male
Birthday: July 1971
Racial or Ethnic Identification: Caucasian
Branch of Military: Army
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The issues that I had from my early, from my early-to-mid 20’s they were mild. They were very mild for the first 10 years after my return. And sometimes, you know, as you get to your 30’s and early 40’s you kind of start, I know that you feel like you can put an excuse to what you feel as, you know, I’m gettin’ a little older. I’m not a spring chicken no more. Is it something that the Gulf caused? It is something that, you know, maybe I’m just workin’ myself too hard. I mean you really can’t put your finger on why you feel the way you feel. And you really don’t know until a little later on, you know, probably my mid-to-early 40s is when I really started to go, gosh, you compare myself to other people that are similar to me and I really just don’t fit in that box. They’re tired and having issues too but it’s not the same issues that I was having. Mine seemed to be a little bit more extreme on many different levels and that’s when I started doing some lookin’ into the VA and researching going is it just me? Is it other people having these issues?

 

“Santos’” symptoms have gotten worse over time, so he isn't sure if they’re related to age or to Gulf War Illness.

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“Santos’” symptoms have gotten worse over time, so he isn't sure if they’re related to age or to Gulf War Illness.

Gender: Male
Birthday: September 1965
Racial or Ethnic Identification: Asian/Pacific Islander
Branch of Military: Army
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Stayed the same as far as the muscle aches and the fatigue. I would say, if I was to look at a graph, I mean I’d just say just over the years I've just gotten worse and worse and worse. And I don’t know whether we can attribute that to just old age or if Gulf War Illness is something that gets worse and worse over time. I mean, I don’t know. I mean that's something that the VA does, and I don’t even think they even know.

 

Greg remarks that he doesn’t know if his experience is normal for a 63-year-old.

Greg remarks that he doesn’t know if his experience is normal for a 63-year-old.

Gender: Male
Birthday: June 1955
Racial or Ethnic Identification: Caucasian
Branch of Military: Air Force
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One of the things that's happened to me is I’m getting old. And so it's hard for me to tell you or to tell anybody how much of what I’m feeling now is possibly a result of the Gulf War or it's just a matter that I’m getting old. I don’t know. But I do know that I suffer from extreme lack of energy. I have no energy. I get out of the bed in the morning after a good night's sleep, and my first thought is laying back down and taking a nap. And once again I have no idea whether that's the typical way that a 63-year-old man feels or whether this is symptoms of something else. I did 90 days in Dhahran, and during those 90 days, I never saw the sun. I never saw the stars. It was right after the Gulf War ended. I mean immediately after. We were still flying combat air patrols over Iraq, and it's when he had set all the oil fields on fire. And our planes used come back from there, because we flew combat air patrol missions for the U-2s. They would take pictures, and at that time, I was out of Holloman Air Force Base, and we'd fly combat support for them, and the planes would come back just coated with oil. Just grungy, grungy, grungy stuff. And that's the stuff that we'd breathe night and day for 90 days, you know? So I'm curious. I don't know. I'm not sitting here telling anybody I have a Gulf War-related incident because I don't know whether I do or not. I have no idea. I've never been 63 before. I don't know what it feels like to be 63.

Questions about GWI care

Veterans shared their questions about the state of VA care for GWI.

 

Joseph questions why the VA would bother diagnosing him with Gulf War Illness if they’re not going to treat it.

Joseph questions why the VA would bother diagnosing him with Gulf War Illness if they’re not going to treat it.

Gender: Male
Birthday: March 1965
Racial or Ethnic Identification: Caucasian
Branch of Military: Marine Corps
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Is there a reason I’m getting these headaches? What’s the symptoms? Well, we don’t know. Well, I’ll tell you, but you don’t want to listen to me. You know, do we have another Agent Orange here, thing going on? What the hell? But they just don’t want to acknowledge something is screwed up? Someone screwed up. You know? If they didn’t diagnose me with that, why did they even diagnose me with it, is my question. Now that they don’t want—they diagnosed me with it, now they don’t want to treat it. What’s going on? There’s a hell of a jump there. Why even say it?

 

“Patty” describes how invisible symptoms effect daily life.

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“Patty” describes how invisible symptoms effect daily life.

Gender: Female
Birthday: June 1964
Racial or Ethnic Identification: Caucasian
Branch of Military: Army
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I just think the hidden cost of Gulf War Illness that may not be recognized. Like in my case, highly functioning, smart, successful career person. And all of a sudden it was like, what can I do? I think that’s an important part that should be focused on. And I haven’t really read a lot about it. Is what’s happening to Gulf War Vets that have things that are preventing them from normal daily living, right? Think that’s really important. The focus is usually on the physical. Like you have physical problems. What is that? Like yeah, we can see you can’t work 'cuz your leg’s cut off or you can’t work because you have these physical symptoms. But what of the other, the non-visible symptoms that are happening out there. And how many other people are really affected? And what is the real outcome for these people. I think it’s going to be really important as this all moves forward. I think Gulf War Illness is probably an area that’s unique in that way.

Questions Around Research

There is a recognition that a great deal of research is being done to explore the health concerns of Gulf War-era Veterans, but that 30 years of research has not provided the answers Veterans are seeking, particularly when considering the amount of time and resources that have been expended to answer questions about the cause of GWI. Several participants—such as Peter, Mike, and “Patty”—have become involved as patient consumers in Governmental Research Programs to help move the science forward.

 

Brian isn’t sure why answers haven’t been found.

Brian isn’t sure why answers haven’t been found.

Gender: Male
Birthday: April 1967
Racial or Ethnic Identification: Caucasian
Branch of Military: Army, Air Force, and National Guard
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I don’t know that they don’t have enough information or the information hasn’t been released or what it is. Yeah. But I think there’s definitely enough information out there, and there’s enough people with enough symptoms that I think there is something going on, but maybe they’re not to the bottom of it yet. I mean, the frustrating part, I guess, would be not getting answers, but that’s nobody’s fault. Everybody is trying. It seems like they care and want to find answers. I guess we don’t know what we don’t know yet.

 

Ken wishes there were answers that would explain why so many Veterans are suffering.

Ken wishes there were answers that would explain why so many Veterans are suffering.

Gender: Male
Birthday: July 1964
Racial or Ethnic Identification: Caucasian
Branch of Military: Army
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I think what little I have read on it, I mean a lot of it I guess is still a mystery what’s going on with the soldiers coming back from over there. I just hope it helps some. It might be one thing that somebody says that can tie it all together, I guess. It’s just, I don’t know the words, disheartening maybe, that a lot of soldiers are going through stuff, and there’s not a lot of answers, so, just some answers I guess. The reason. Why is everybody hurting?

 

Joseph wants to know why no one is helping the Gulf War Veterans.

Joseph wants to know why no one is helping the Gulf War Veterans.

Gender: Male
Birthday: March 1965
Racial or Ethnic Identification: Caucasian
Branch of Military: Marine Corps
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It’s not an illusion. It’s not a figment of my imagination or all the other Veterans, complaining of the same symptoms, the same things. It’s not going to go away. It’s going to get worse. It’s getting worse. How are—come up with a plan to help us get through it, would be my statement to you. You know you have your core group, something—don’t know what, don’t care what it is—something was done. How are you going to help us, get us through? I know it’s not going to happen tomorrow. But show us improvement. Because right now, VA—I don’t mean you guys—the VA has done nothing. They barely acknowledged.

Questions Around Children’s Health

In addition to grappling with how their service has influenced their own health, many—including Ken, Shannon, Debra, “Edgar” and “Santos”—shared concerns about how deployment related exposures, including prophylactic medications have affected their children.

 

“Santos” worries that his disease affects his DNA and his post-Gulf War children were affected.

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“Santos” worries that his disease affects his DNA and his post-Gulf War children were affected.

Gender: Male
Birthday: September 1965
Racial or Ethnic Identification: Asian/Pacific Islander
Branch of Military: Army
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I mean, if I had some measure of success, I could say, yeah. Hey, do it this way or do it that way. I don’t know what to tell them other than don’t give up. Just getting the diagnosis don’t mean shit. I mean, all that tells you is that there’s a couple extra remarks in your medical records, but there ain’t no damn, there’s nothing they can do for you. Now I’m reading that, I just read this maybe a couple days ago that I could be genetically passing something down to my kids that were born after I got back from the Gulf, so it doesn’t look too, the news keeps getting worse. Like chromium. I mean you get exposure to chromium, that tweaks the DNA. Your kids wind up with some disease. So did I inadvertently pass something down to my two kids that were born after with my current wife? I don’t know.

 

Debra hypothesizes that her son’s health conditions stem from her time in the Gulf.

Debra hypothesizes that her son’s health conditions stem from her time in the Gulf.

Gender: Female
Birthday: November 1966
Racial or Ethnic Identification: Caucasian
Branch of Military: Army
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Well, from what I’ve read, they all have a fair amount of the same symptoms. Autism is a big one, being you know said that they’re autistic. But they have some sort of neurological abnormality, and they have big heads. Okay, Bryson’s got a little head, he’s got just the opposite. But he’s, you know they suffer from mood disorders, I mean it’s really very similar, I think to what the Veterans suffered, when they hit country. You know right after, these are all just my theories. You know, right after the virus was working its way through the system, you know through their systems, they went through the chills, and the fevers and the headaches, and the anger, and you know that’s I’m sure part PTSD, and maybe I’m wrong. But, I think it can be a sign of neurological damage, as well. And, I think that’s what the virus ends up doing, is affecting them neurologically. Well, a lot of these kids, the Gulf War babies are neurologically damaged, most of them, are, with different random, different diagnoses. Bryson had like fifteen different diagnoses, none of them really quite fit him. But they’re close enough for him to get services, and that’s really all I care about. All these years, it doesn’t matter, as long as you can get the care that you need, then that’s fine. But, I would really like them to, there’s some, I mean Bryson is, he’s bad, but there’s some that are worse, or some that have multiple children. It seems like, if they were born after, like after 2000, not as much. But, before, yeah.

Similarities to the Vietnam Era

Veterans with GWI expressed feeling lost between the Vietnam War Era and the Operation Iraqi Freedom and Operation Enduring Freedom Era. Several noted the similarities about how long it took for the DoD and VA to recognize the adverse effects of Agent Orange among Vietnam Veterans, and the 30 plus years that had gone by since the first Persian Gulf War, without ample recognition of the possible link between exposures and health conditions and needed resources to care for those with military exposure concerns.

 

“Roger” sees too many coincidences between the Gulf and Vietnam-eras

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“Roger” sees too many coincidences between the Gulf and Vietnam-eras

Gender: Male
Birthday: April 1959
Racial or Ethnic Identification: Caucasian
Branch of Military: Army
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You know. That’s what they do, they see military people day in, day out. Civilians you’re special. So that hasn’t been that bad. So it’s the attitude you know, well let’s see what we can do to help you out. And you’ll hear the same thing from VA doctors, and they even might have a different perspective because they’ve heard the similar problems. But you still, like I eluded, mentioned before you still get this feeling like, we can talk about everything but let’s don’t talk about that, you know. It’s not what’s said, it’s what’s unsaid, you know. Well I don’t, and it’s like all those times they said, well I don’t see how that could be linked to your service in the Gulf. Well to me there’s a lot of coincidences that all link me to the Gulf as a, I didn’t have this problem before and it had something to do with nerve agent, which was not far away, what else could it be? You know, well you know there, could be anything. And that’s true, they talk about, well it’s the shots they gave us, we got all the shots and all the other stuff, or the depleted uranium, yeah I was exposed to some of that. When we pulled out of that one position, I told you about and then came back. Well when we stopped there was some knocked out M1s nearby and we knew, and they were marked off, danger. But we’re all standing there saying, this is one of ours that took a hit and we want to see what it was like. But we knew, we were also very aware that it was exposed to depleted uranium. So there’s these things it all could be but we don’t want, we don’t want to go there. So you feel that underlying, things that are not being said. We want to avoid that because that’s probably going to cost the government money, and I get that too. What happened with Agent Orange, wait ‘til most of them die off.

 

Charles sees red flags in his care reminiscent of the Vietnam era.

Charles sees red flags in his care reminiscent of the Vietnam era.

Gender: Male
Birthday: September 1969
Racial or Ethnic Identification: Caucasian
Branch of Military: Army
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I get it, there’s no set diagnoses where you get to say—Oh, yeah, you have Gulf War. Even to this day, they won’t admit some people, whatever they died from, if it was Agent Orange, which it was, you know? I believe, for the most part. And that makes it hard, because like I said, I’ve never really met any doctors that are willing to say that’s—and I think that’s probably maybe the directive coming down that they’re not allowed to—you know. And I’ve read plenty of things on these sites that a lot of when you mention that, they like, tune you out. Or they don’t even want to at least say—It’s possible. Yeah. It’s possible. You know, a lot of them won’t even do that. Just say—Yeah, I feel you. You know, just on an honest, you know, person-to-person level. You know, nobody is recording it or it’s just me and you in here, and say—Yeah, I believe you probably—quite possibly your health issues could stem from your time over the Gulf or the shots that you received. Because when I tried to file my first disability thing, I said—they wanted all my military records. They’re supposed to have all that back somewhere in Indianapolis. So at first, they said they burned down, they didn’t have it. It all burned. There was no—so I went to see an advocate. And he was like—Burned? That shit was like, in the 60s. What do you mean? So anyway, when I finally—he helped me and I finally did get it. And the shot thing—it had my shot record and showed I had one shot. I said—Where’s all the—I had way more. I had at least 10. Ten to 15, I would imagine. Shots. Where’s all the rest, what I got? How come that’s not on there? So to me, that’s like a red flag to me. I’m like, I want to see that, what you shot me up with. Like I said, we don’t ask. You just stand in line and roll your sleeve up and—Get some shots and be on your way, you know?