Women's Experiences Navigating VA Care and Service Connection
Women we spoke with often felt dismissed by providers and frustrated over attempts trying to connect their symptoms to their exposures in the Gulf. Grace explained her frustration seeking service connection: “the implication was that we were lying to get free money from the government. I was so angry, and I thought . . . no wonder, if they put everybody through something like this, that none of them want to attempt to get a disability.”
Building a Culture of Women-Centered Care and Services in VA
Many women participants found VA services beneficial, but they stressed the need for more women-centered care options. For instance, one participant was happy with care she was receiving at a VA Women’s Clinic but was devastated when it closed and she was transferred to a larger medical center with more provider turnover: “So you’d get comfortable with one doctor, 30 days, 60 days, 90 days later, she’d be gone.”
Shannon would like more VA programs and classes for women.
Shannon would like more VA programs and classes for women.
I’ve taken a lot of classes. I think that there should be way more classes just for women, because women’s issues and men issues are two different things. And I find that I am the only female, other than a wife that’s in the group I’m in now, my Whole Health group. And I find it difficult to share, you know not because I don’t want to but it’s just that I’m in a room full of men. And there are some things that are female related versus men, and I just kind of feel uncomfortable about sharing some of my things, so. And men don’t relate you know to a lot of the women issues, so. So that would be nice, if there was more all women groups, that would be good. And, 'cuz there’s a comradery there, I’m not going to bond with any of those guys, but I might bond with some of the women and you know we kind of need each other, you know? Because we’ve been through experiences in the military that men have not been in and that men have been maybe the perpetrator in. So it’s a lot different situation when you’re just in a group with women, so. So that would be good if they had more women based groups.
Grace’s doctor wrote in her chart that she was “paranoid” about her service causing her health problems.
Grace’s doctor wrote in her chart that she was “paranoid” about her service causing her health problems.
And I had a pretty good doctor, I thought. But I finally told him, I thought that maybe this illness, this bronchitis was from Desert Storm. And, it wasn’t ‘til I applied to get in the VA system, about five years after that, that I found out that he had written, on my chart, that this woman is paranoid about her service, and she thinks that recurrent bouts of bronchitis and pneumonia are from something she encountered over there. I couldn’t believe he had written that, and even years later, when all the stuff came out about the groups of illness, Gulf War syndrome, you know the lung diseases were the smallest group. But at that time when I found out about it, that most of them had died, and I had two friends that had died from unknown lung disease consisting of lots of bronchitis and pneumonias. Anyhow, he sort of apologized to me, the doctor, I couldn’t say it was a very enthused apology, but he did said he shouldn’t written that in the chart. And then I found out, because of that chart, that’s why I hadn’t been allowed, I had to interview at least five times, before I was allowed to get in the system and be treated like a Veteran that had a disability.
Heather felt frustrated with the tone of letters denying her claims for service connection.
Heather felt frustrated with the tone of letters denying her claims for service connection.
What they write in those denial letters would push anybody, it really, really horrible things. I mean they pretty much called me a liar, and said that, 'cuz they couldn’t find the information, and it was the VA that sent me up to New Jersey Gulf War center [War-related Illnes and Injury Study Center, or WRIISC]. And they, in my denial they said, we have no record of it, pretty much saying, insufficient evidence to show that you’re, I mean more or less to me it said you’re lying. And I have the paperwork, I went up there, it’s a VA center, so you know. But they don’t say it nicely. So, and I still get angry when I think about some of the things they wrote in these denial letters. Here’s an example. My glands were swelling all the time, it’s called cervical adenopathy. It probably was a male evaluator because he wrote in my denial letter, that my cervix is fine. I have that. Now, come on. That was in the mid to late 90s. And I thought, you know you give them stuff, and it just infuriates you, and you know most of us don’t feel good, and we’re under great amounts of stress. It affects your family situations, you know. It affected my first marriage, and that didn’t end well. It affects every aspect of your life. And then, you know you get these letters that are just not nice. I mean they need to change that.
Debra stressed the importance of Veterans being believed when reporting health conditions and seeking disability.
Debra stressed the importance of Veterans being believed when reporting health conditions and seeking disability.
They really just need to be believed. I mean, that I can tell, they need to believe, they need a doctor, or the system to believe that yeah there really could be something wrong with them, and it really could be service connected. Even if it’s been 20 years since they’ve been in the service. They aren’t, you know they aren’t lying, or tying to get over, or you know they just probably can’t work anymore, you know or they’ve gotten to a point where they're body just won’t allow them to do what they need to do, and so they need help. But they need somebody to believe that, and not just, you know, including other Veterans. You know other Veterans are even, can be rude, as all get out. Well I’m not sick. Well, bully for you, well isn’t that awesome? And that has what to do with me? You know sort of thing, but yeah they just need to be believed and respected, for what they’ve given up, and whether they, you know whether they or anybody else realizes it, they’ve just given up a lot.
“Patty” expressed the frustrations over her three-four appeals and how proof rests on Veterans.
“Patty” expressed the frustrations over her three-four appeals and how proof rests on Veterans.
It’s been a huge challenge for me from the beginning. When I was in VA, I did the registry there I believe. And I signed up with, I don’t really know what I signed up for. But there’s never been a true establishment of my condition with the Gulf War. It’s always, to be honest it’s always on the Vet to prove connection. And that’s a really hard thing to do. I mean how are we supposed to prove connection to something when it’s still being studied to this day and they're finding connections now. So, no. I filed a claim, it was denied, I filed another appeal, it was denied. So, now I’m on my third or fourth appeal to the board. And before the board right now in my case, present information to the board. So, I’m just waiting for a judgement from that. So, it never really has been any, I mean I think they suspected it maybe when I was in the VA. But again, there’s no direct link. Nobody’s ever said anything that it’s related or not related. I know. I mean I feel in my heart that based on my, how I felt before I went in the timing from when I got back. And all the neurotoxic exposure of I had there, that it’s a logical conclusion that it is likely my immune system was in such a state, during the Gulf that allowed this to happen. That’s my view of 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.
Children and Reproductive Health
Several of the women participants discussed their struggles with reproductive health, the health of their children, and the effect their illness had on their decision to have children. To hear those stories, click here.