Living with an Invisible Disability
Many participants said that because their injury cannot be outwardly seen by others they are believed to be making it up, or using their injury as an excuse. As one Veteran explained, “the hardest thing as an individual that’s not missing a limb - I mean for PTSD and TBI - you can’t see that stuff, so everybody just thinks you’re lazy and just stupid.” Another recalled that “for a long time no one actually believed there was anything wrong with me. They thought I was faking it.” Margaret said she often felt “weak” and like she was making too much of her symptoms.
Brian says “People are like if you can’t see it, it’s not there…”.
Brian says “People are like if you can’t see it, it’s not there…”.
I don’t know how I would feel about a visible disability because I’ve never had one, but I think - I do think - I wouldn’t say misunderstood, but I think sometimes people are just if you can’t see it it’s not there, or it’s not as bad as you’re saying it is. Like, “Oh, you have PTSD. You’re using it as a copout or whatever.” It’s like no, I actually wanted to kill myself the other day. I think it’s downplayed a lot. Which is ironic because at the same time they think we’re going to snap and kill everyone. Right, there’s no middle ground. You’re either totally crazy or you’re making it up.
I: In what way do you think it gets downplayed? Can you say more about that?
I don’t know how to say more about it. It’s basically like I said, you can’t see it, so it’s not there. So, I think, like she said, it’s either this or this, so I think it’s just downplayed overall.
Margaret describes what it is like to have a disability you can’t see and the feeling that she was making too much of it.
Margaret describes what it is like to have a disability you can’t see and the feeling that she was making too much of it.
But people in my circle of friends or family. I felt weak, you see, I felt like I was being a weakling. “Well what do you mean you can’t cope with this, come on.” And that, and so a lot of this was self-imposed, OK? You know, yeah, I felt weak. And it was just like too much to try to explain. And you know most of us, if we can see what’s wrong with you, “oh yeah, you know, you broke your arm.” But with me, you couldn’t see anything, you know. So, I began to feel like I was making too much of it, so it was better to just be alone.
Marcus was frustrated when medical professionals didn’t realize the extent of his suffering: “just because you don’t see them and you don’t recognize them, I don’t think you should doubt the severity of their condition.”
Marcus wonders why it is so hard for some people to accept the seriousness of the effects of brain injury.
Marcus wonders why it is so hard for some people to accept the seriousness of the effects of brain injury.
One thing that I experienced is why is it so hard to prove or so hard for some people to accept, because one thing I experience a lot it people just kind of, sometimes in regard to my denials from social security you know, some of the wording is like we see where your condition is a little bit bothersome for you but we really don’t think it could affect - you know how can a person say that this brain injury that you experienced that changed your whole life is just a bit bothersome, how can you say that to me? And I just get a little bit upset about that and I wish that I could have them see my whole life, what happened from that point on to this point, and then you could see. I just think - and these are the professionals - even what I experienced with the specialist I see, sometimes they’ll like tell me what’s going on and it’s like…recently, just recently - and that another reason I switched over from Johns Hopkins, my last visit to my neurologist was the worst experience that I had because she brought somebody in the room and I don’t who this guy was but, you know doctors bring people the room all the time, and this guy went through this whole gamut of telling me why I shouldn’t be, why he doesn’t believe I’m suffering, and how could you be suffering for that long, and you should do this, you know he told me you need to go to physical therapy and I said I go to physical therapy. I done all that stuff. I think it’s a bit frustrating and I don’t understand why some people - why it’s so hard for some people to understand that traumatic brain injuries - just because you’re not walking with a, or not paralyzed, you know you know how some injuries you can just tell that person, just because, there are other symptoms that I have, that people have, and just because you don’t see them and you don’t recognize them, I don’t think you should doubt the severity of their condition.
One Veteran told us that although he screened positive for TBI, his MRIs don’t show evidence of the injury, which makes him “nervous,” and he wonders if maybe they missed something.
Although Miguel screened positive for TBI, his MRIs do not show any evidence of the injury.
Although Miguel screened positive for TBI, his MRIs do not show any evidence of the injury.
They ask you about - when you get out of the Marine Corps - they ask you about this, this and this. Check this off, check this off, check this off. And then - when I applied for Service Connected Disability for it - they, I can’t remember where they sent me but it was one of those where they ask you more in-depth questions. You know, are you experiencing this, are you experiencing this, are you experiencing this? And, I guess from everything I answered - I mean I answered truthfully - they determined that “Yes, you do have traumatic brain injuries, it’s just from, we can’t see anything from the scan in 2006, the MRI,” which kind of makes me nervous because I’m thinking maybe there is something there, you’re just not catching it. But, I guess I feel it, you know, it’s not pleasant.
As John put it, “the bad part is that they can’t fix it, and most of the time they can’t even find it.” Despite not being able to “prove their injury” many Veterans still suffer – “all these guys are always saying I have this, and I have this, and I feel this, and I feel this, and I feel that, you know, they couldn’t all be getting together and making it up, right?”
For John, the bad part is that they can’t fix it and most of the time they can’t even find it.
For John, the bad part is that they can’t fix it and most of the time they can’t even find it.
The bad part is they can’t fix it. Most of the time they can’t even find it. I did an MRI probably a hundred times of my head trying to find something, they never find anything. And the titanium plates have a tendency to make it difficult. And my understanding is that’s pretty typical of TBIs.
Some get over it in a few weeks, some don’t get over it. But from what I have heard, which is from other Veterans, a lot of them don’t get over it. It’s like a permanent thing. And they only give 20% disability for it. They give you 80% for PTSD and they give you 20% for a TBI…They denied TBI for 2001, 2002, even 2003 they were denying it, until - because you can’t prove it. I can’t prove to you that any of these issues I have. I can’t prove it. There’s nothing shows up in here, but the body of evidence. If all these guys are always saying I have this, and I have this, and I feel this, and I feel this, and I feel that, you know, they couldn’t all be getting together and making it up, right? So, the body of evidence indicates that yes, there really is TBIs.
Margaret felt like her co-workers couldn’t trust her, because she frequently had to call in sick.
Margaret felt like her co-workers couldn’t trust her, because she frequently had to call in sick.
I ended up frequently while I was still working, you know, having to call in sick at my job. And that was horrible, for me to do because I, I had the feeling that my staff, my co-workers couldn’t trust me. “You going to be there, you going to show up?” and sometimes I just could not be there.
(See also: Evolution of TBI Awareness, First Signs Something Was Wrong; TBI Screening & Diagnosis, Changing Sense of Self)