“Mary”

“Mary” is married to a Veteran who suffers with Gulf War Illness. They met in 1995 and married in 1999. Together, they have four children, two of whom are twins. Her husband, “Edgar,” came back from the Persian Gulf in 1992. Soon after, he noticed that he had blood in his urine, an issue that doctors couldn’t identify the source, as well as problems with his nervous system: “Sometimes his speech would be affected, and I would see the tremors.” He was diagnosed with ADHD and adult hyperactivity disorder, but the medications provided had no effect. His nervous system problems also affected his mood, as he would shift from being mellow to very excitable. As his caretaker, she noticed through the years that his symptoms declined, and that he must have had more than just his diagnosed adult hyperactivity disorder.

After their marriage in 1999, she also noticed he would shake when he slept, and would sweat at nights, and his sweat would stain his clothing and the sheet brown: “He would be clean, showered but the sheet would stain, his clothing would stain.” After he came back from another deployment in 1999, she noticed he became irritable: “When he came back, I noticed that he was very irritable, easily irritable just different, different things going on with him as far as his mood he just seemed to be different.” She also mentions that he received another shot of the anthrax vaccination in this deployment. However, things took a turn for the worst in 2008, when he started to lose balance and fall: “He would get up in the morning and he would fall.” Unfortunately, her local VA at the time did not provide her husband with the help he needed for his Gulf War Illness: “Because nobody at the VA here… had ever heard of Gulf War Illness or knew anything about it.” With the decline in his symptoms, she started to research more about the Gulf War and spoke with her family doctor—a private practitioner—about it, who told her that he had another patient with Gulf War Illness. It was then that she realized her husband did in fact suffer with Gulf War Illness. After that, they started to talk to military friends and family about Gulf War Illness, and joined support groups, such as the Gulf War Illness Parents and Babies United. She learned that not only were many of them having similar issues, but the issues were also spilling over to some of their children too: “Their children were born, and they were on the autism scale and things like that. They’re having ear issues like either loss of hearing, intermittent hearing, they're having joint pain, they're having mobility issues, they're having speech issues. Many of them, the females are having issues with their reproductive systems, missing reproductive parts, different issues.” She claims that her husband and her noticed some of those similar issues with their own children. Her daughter has a delayed speech issue, caused by an auditory processing disorder, while her son developed lumps in the sole of his feet, paired with issued in his knee.

Living with a Veteran who suffers with Gulf War Illness can be daunting and lonely: “We’ll have company come over and ‘Edgar’ will be able to entertain and be on his best even though he’s in pain, but nobody really knows what it’s like on a day-to-day basis for me, or for the kids, or for ‘Edgar.’ It’s, it really is an emotional toll, and nothing is really normal.” She also claims that living life with Gulf War Illness Veterans can also be a lonely path, and the emotional toll can devastate marriages, as she’s seen with many other Gulf War Illness families: “I’ve seen and heard a lot of people that have lost their marriages and because their wives or their spouses don’t believe what’s going on with them.” After almost three decades since the Gulf War, she feels like there are still many unanswered questions about Gulf War Illness: “Nothing’s in place and it’s been 28 years since the original Gulf War, and there’s adult children with problems … we’re still being exposed, possibly to all of those things… how long does it stay in the soil, and the air, and the water? And what is the anthrax vaccine doing?”

Amid the uncertainties and hurdles of living with a Veteran suffering with Gulf War Illness, she claims that clinging to her faith has helped her go through these hurdles. She suggests other caregivers to seek support in online Gulf War Illness groups, and to seek opportunities to focus on oneself too, such as study or exercise. She would also like to see more opportunities for Gulf War Illness families to be together and share experiences and support one another: “Some retreats, that would be so wonderful, a family retreat for all of us once a year to go like that would be so wonderful because we all know exactly what we’re going through.”