Social Life and Everyday Activities
Across many domains of everyday living, Veterans with GWI described the influence that illness and their overall military experience had on their social interactions and everyday lives. Below, Veterans describe grappling with feeling socially isolated or less motivated to be around others. Veterans also share stories of being limited in their daily activities and hobbies, which they feel is related to their GWI and health.
Social Isolation
Many Veterans described having a hard time being around civilians, in large groups of people, and sometimes even family, following their deployment, which was amplified as their health declined. Others said their illness experiences made it harder to relate to others or made them less motivated to engage with others.
Outside of his little group of people, Paul doesn't like being around people or socializing.
Outside of his little group of people, Paul doesn't like being around people or socializing.
That’s kind of, okay so, the first thing the PTSD, so I do have symptoms. I'm not a violent, aggressive person, so nothing like that. I'm very calm and mild and common sense and grounded, so that’s not an issue. It just, some of the stuff, I don’t like traffic, like it freaks me out. Heavy traffic or if somebody cuts me off or rides my bumper that really freaks me out because of that one, that traffic accident where all the prisoners fell off and got smashed. So that just really bothers me. I don’t like big groups. I cannot stand to be around crowds. This may sound bad, but I really don’t like people. I kind of have my little group of people that I'm around my group of people. And I'm not social; don’t want to be social, totally disinterested. You know what I mean? So I do have those issues. So I just basically, I go to work, I go home, I don’t do a whole lot. I guess I kind of isolate myself and I do it intentionally. Aches, the pains, that stuff I just deal with it. I just, you know, just keep going. Go to work, go home.
Shawn’s physical health caused him to withdraw socially.
Shawn’s physical health caused him to withdraw socially.
People ask, how's your day? They really want to hear good. How is yours? Good, and go about. So if you're really having a lousy day, I don’t feel well, they don’t want to know why. Or you at least think they don’t want to know why, so you're left that doubt. What are they thinking about you and why you're not doing a very good job today? So, yeah. But all these physical health problems end up becoming a mental health problem. Anxiety. Not wanting to leave home. Try to not focus on it, but then you become a prisoner in your home because you, like I said, you don’t want to go out there. You feel like garbage, and you start not wanting to deal with questions or anything why you don’t feel well. I mean, it's amazing what people will ask you, personal questions. People pry all the time, and there's just certain things I don’t want to talk about. I have a hard time telling you I have IBS and diarrhea, and that's something everybody deals with at some time or another probably. I don’t tell my mom. I don’t tell my sister. I don’t want to tell my girlfriend. That's the least attractive sexual quality a person can have, to know they're on the toilet. So, these are very personal, and then you withdraw. Then it goes back to what I said earlier about the mental health aspect, and now you're alone and lonely and withdrawing from society, even though I force myself to do something with people. It's like, okay, I've got to go home. I've got to get back in my cocoon of whatever.
To cope with depression, guilt, and anger after the Gulf War, “Roger” self-isolated.
To cope with depression, guilt, and anger after the Gulf War, “Roger” self-isolated.
After I left, after my second marriage failed, and a few attempted relationships, and quit my job, went out to [state name redacted], lived with my sister a few years. I had all, finally I had all this time, I didn’t have anything to do. What I’d done was I paid off all my debts, you know cashed in a good half of my 401k, my ex-wife got a lot of that, and I took a lot of it to move out. And so I had all this time with no responsibilities, no bills, my sister just let me do whatever. I’d stay in, lock myself, not lock but I’d close the door to my room and just stay drunk. Almost three and a half years straight. And get high. I wanted to get that out of my system. I kind of like intentionally did that, just blocked the world out, which probably from psychiatric point of view is not the best thing to do. But that’s what I wanted to do. And I got that out of my system.
Since the Gulf War, “Santos” has felt out of place with family and friends and spends much of his time alone.
Since the Gulf War, “Santos” has felt out of place with family and friends and spends much of his time alone.
But that's what it was like soon after getting out of the Army, going back home to my family. Other people were having these big welcome home parades and the ticker tape and the barbecues and the hero's welcome. I mean they gave that to me too, but I sat there numb. I sat there numb. I just couldn’t get into it. It's like you get into an accident on the day of your big birthday party. It's like you're no longer in the mood to enjoy your birthday party because you got, it felt like just something was just not right. I don’t feel right being here, and I feel that way all the time. I started working with inmates, and I found that I could relate more to an inmate than I could with my wife. I felt more comfortable being in a room with robbers and gang bangers and murderers than normal people, and I still don’t know why that was. I got along very, very well with them. But when I got myself out of that environment, when I left the facility and went back to my employer, I felt that people were against me again…I was having a lot of problems dealing with people. Well, I pretty much, I mean I have no friends here. Zero. I don’t associate with anybody. I have no, just recently I started with this [Veteran group], and that's… the only socialization I've had other than my wife and my kids… I don’t have a group of friends I hang out with. I don’t have any regular meetings or athletic clubs I participate in. I usually stay away from people. I’m usually, almost always by myself. And on the nights that my nightmares get too bad, if it's not as cold as it's been, sometimes I'll sleep in my truck. Sometimes I'll just leave the house. I'll be gone for three, four, five, six, seven, eight, 10 days, and I'll go to some logging road up in the mountains and just sleep in my truck.
“Patty’s” memory and speech changes affect her engagement in socializing and relationships.
“Patty’s” memory and speech changes affect her engagement in socializing and relationships.
Even though I was just talking a short time, I can feel my tongue thickening. And it gets harder to talk for longer periods of time. And I think that’s one lingering affect that’s really affected me throughout my time and my careers is the ability to communicate effectively has been a challenge for me. In all my jobs since the Gulf, I have to work extra hard to be able to communicate in my jobs. And I’m really conscientious, I don’t really enjoy communicating with people anymore. Like even a friend, I don’t really like to communicate much because I don’t enjoy it. And it’s challenging. So, that’s been a long-term effect, I think. And then the memory piece, I’ve noticed since I’ve got out, it’s- I don’t I have a more challenge remembering short term conversations. And just I think I tend to gravitate more towards casual encounters instead of in-depth encounters of people, friends. Because it’s just easier that way. Like neighbors, I’ll chit chat with neighbors, that’s great. I can talk to my neighbors that’s fine. But I don’t want to engage any deep relationship things, because it’s challenging, and you don’t want to do that. I just think like I said, I wasn’t told- I don’t really read books a lot in part because I can’t really- I lose tense, I don’t really focus on it well enough and remember what I read. For me it’s just finding things you enjoy like nature, exercise, being outside. And just relying on those things to keep you active and engaged in things. Yeah. And hang out with people who are talkers, so they do all the talking. And you can be- I’m a great listener. And I gravitate towards listening engagements.
Everyday Activities and Routines
Veterans shared how their GWI symptoms—such as pain, fatigue, migraines, or IBS—make every day routines, work, and hobbies difficult.
Ken can’t participate in hobbies or do everyday activities without experiencing pain afterwards.
Ken can’t participate in hobbies or do everyday activities without experiencing pain afterwards.
So the more active, then the more I would hurt later. I mean for now, I have to debate what I want to do, if I want to do it, depending on how the pain is going to be after. So I used to be active playing soccer, indoor soccer and outdoor and all that stuff, and I know that's gone now. But even when I was playing soccer, it would just take so long to recover. But, again, you turn that to old age or, but then you see, I’m only 54. You see 60-year-old guys out there running circles around me. And I still have it now, it's just an all-over body ache depending on what I do. What I did yesterday will depend on how I’m doing today because if I go home and I walk the dogs, which I’m trying to do more of, then when I get back, I’m done. Not for the day but for a good little while. I've got to relax and sit down and try to get that pain to go away, but it just doesn’t.
Migraines, IBS, and pain have affected Peter’s ability to engage in everyday activities and social events.
Migraines, IBS, and pain have affected Peter’s ability to engage in everyday activities and social events.
The IBS, like I said, has kept me home for many a things. I can’t tell you how many concert tickets or basketball game tickets I've bought and wasted because I couldn’t go, and that's just really frustrating. Something as simple as going to the grocery store. I could feel fine and get in the middle of the grocery store, and my gut says, no, now's a good time, and just put me in knots. And if the diarrhea comes, I’m just dying to find a bathroom. And if I can't, it's just so painful. I mean it's like curl up on the floor painful. Migraines are another thing that limits me. I mean, forget it. I get a migraine, I've learned that I don’t care what it is. I’m not moving. I’m sitting in a dark room, and I’m downing triptans until this headache goes away. I had a headache once that last for 30 days, and it was brutal. I mean brutal. So, I get a headache, that's my number one priority is doing everything in my power to abort that headache. And if that means going into bed and laying down in the middle of the day and hoping that I can fall asleep and it will break the cycle, that's what I do. So when that happens, yeah, that's completely stopping everything. The inflammation, the chronic pain from the inflammation, that limits me. That was really bad this summer. I mean I love to go camping in the summer to get out of the house. It's peaceful, and it's just a good time for him to just be a dog. And there were times last summer that I would get out to camp, and it was just like I couldn’t walk, so we'd sit there in the chair, and he's looking at me like, what are we doing? Let's go do something. There's a lake. Let's go swimming. I was like, I can’t walk, dude.
Pain and IBS influenced Shawn’s ability to participate in hobbies and activities, including coaching.
Pain and IBS influenced Shawn’s ability to participate in hobbies and activities, including coaching.
It does make it difficult, though, to coach some things when you can’t do it. And I’m not talking about slamming the ball down or running a mile in four or five minutes, but just, you can’t even demonstrate the form or the technique because of pain. Or, in the case of the IBS and the nerves, some days you really can’t even stand up. I've sat on the bench just in pain, and you just, you're not going to burden the kids with it, like, how come you're not coaching? I am. Just go out there and do your best, and you're just gritting your teeth, and it makes it hard for sure, but it limits what you can do. I've tried to put myself in a position. I talked to an athletic director at a college in New England a year and a half ago about the possibility of coaching for their school, and he said I have the qualifications. I have the degree. I have the coaching experience and everything, but how could I with what limits me? It would be real tough, and that's kind of my dream. So, I mean we all have things that limit our dreams. That's what I find joy in doing, and then yard work. I've always been somebody that liked working in the yard, although the good thing about that, you can put it off till tomorrow. Still, there are things you need to do today with any job or with any hobby. So, those things keep me sane, but they're difficult doing sometimes. I could sing, but then everybody else would be at the hospital.
Heather’s chronic fatigue limits how often she leaves the house and her day-to-day activities.
Heather’s chronic fatigue limits how often she leaves the house and her day-to-day activities.
It’s gotten a lot worse over the last couple of years. I get very, my body and brain cannot handle too much. So I don’t do a whole lot of stuff. I even get overwhelmed going to the store. A lot of times I’ll cancel my VA appointments, 'cuz of the thought of, my husband will take me a lot of times. And now that my mom’s here, you know she’ll help. But it’s very overwhelming for me to venture out sometimes, and this helps a lot, and it doesn’t impair, you know my ability to, if I have to drive or something, it doesn’t work that way. But it does help me be more alert, but even with that, I feel overloaded and when I get like that I can’t even watch TV or even look at my phone on and follow Facebook 'cuz it’s like overstimulation, but. And it’s the same thing that happens if I try to overdo it physically.
For Calvin, fishing was his passion, but he hasn’t been in over a year.
For Calvin, fishing was his passion, but he hasn’t been in over a year.
Calvin: I keep myself occupied. And I used to fish a lot, but my back won’t let me do it like I used to. Because you gotta carry stuff. I’d love to go fishing, that was my release. But I ain’t been fishing in a year now. But that was my passion, hunting and fishing, but I just can’t do it like I used to. Now I'm wait’n on hunting season. I’m gonna be able to shoot a gun now. I’m go’n deer hunting. I’m go’n. My cousin help me a lot too, though. He younger. He can do all the heavy lifting. And it just got worse as I get older. Because I don’t play basketball. I don’t do anything physical. Obviously, I don’t cut my grass. But I can’t even cut grass. I can’t do that. I ain’t cut grass in 15 years. Luckily, I got boys. But I can’t, if I go out there and cut that grass, say if I just go cut the grass and weed it and everything. I won’t be any good for a week. I’ll limp around here for a week so sore.
Interviewer: And one thing is there’s like some things you say that you don’t do, like fishing and cutting grass anymore. Right? Are there any things you do now that you didn’t use to do?
Calvin: Uh-huh. I’m pretty much even keeled there. Nope. Do the same thing. I used to play basketball a lot. And flag football when I was young, but I ain’t did none of that in over 10 years. I ain’t played basketball in 10 years. Too much up and down. And the doctor told me the first time, he said you need to stop cutting your yard. You don’t need to do nothing physical.