HOPE Speaks

Gaps in TBI Services and Education

After a TBI, many people return to their lives still struggling to comprehend and cope with the many life changes and complexities that frequently occur.

Many people receive professional help for their TBI, however, many others do not. And some try to do this on their own. Individuals in underserved areas may not receive the most up-to-date care, and treatment options and resources may be limited.

Knowledge can help you feel more empowered, more enabled, and more hopeful. The insights illustrated from these quotes clearly point to the need for expanded education and information sharing, broader access to rehabilitative care and other services, and increased resources for individuals with TBIs.

Questions to ponder:

  • What are some of the gaps in medical care and service provision for individuals with brain injuries?
  • What information can be gained from these personal experiences to improve some of the gaps that exist?
Headshot of Lauren

“I wish the significance of a brain injury, and the impact it can have on your life, had been explained to me. I didn’t receive any information from the medical staff about how much it could change. Nobody told me it would be a severe, long-lasting, disabling injury. I wish that had been conveyed, or at the very least that I had been connected to resources that would have explained it, because there wasn’t even a pamphlet! Talking to somebody and getting connected to resources would have helped me get to the next place.”

“I wish the very first doctor had told me, ‘This is a big deal and you should take this seriously.’ Even if I didn’t do anything with that information, at least I would have heard that it was a real thing. And I probably needed to hear it many more times. Because even when I got a mild TBI (concussion), the impacts were severe!”

Headshot of Brandon

“My wish is for more education for people with a brain injury. It’s impossible to educate everyone about brain injuries because there’s just so much to learn. Maybe most helpful would be lessons for students with brain injuries about how to communicate to others that every day is so different. This unpredictability is the biggest problem! For example, most people with brain injuries can’t go to class on the first day and say to the teacher or professor, ‘Hey, these are the issues I’m going to have and this is what it’s going to look like,’ because there is just too much variability from day to day.”

Headshot of Brett

“I think we need to have more awareness [of brain injuries] in the medical world. …But also for normal people (laugh) that aren’t in the medical profession, to understand that this is a thing. After my first TBI, the doctors just told me I had ‘cleaned my bell.’ It was pretty severe and I was hospitalized, but they called it a concussion. They didn’t say, ‘You’ve had a traumatic brain injury.’ They said, ‘Yeah, this happens, it’s not a big deal, you’ll be fine.’ I feel like that was something not adequately explained—like what happens now because of this? Like my anxiety, my depression, my lack of sleep, my anger—you know, tons of different things that happened. None of these were explained to me. No one said, ‘These are possible situations that you may experience.’ They didn’t explain the difficulty enough, and that I might find myself in a new scenario almost every day!”

“I feel like [they are] downplaying TBIs by calling them concussions. And when someone gets their “bell rung” and we call it a concussion, and we don’t think any more of it, that is detrimental to society.”

Headshot of Lauren

“It has felt many times like I’m being passed off or that the medical community wanted to focus only on things that can be concretely identified, like headaches. There’s such a plethora of issues that people can experience after a TBI and I think the easiest thing for providers to attack are the physical ones. That is fine, but please don’t pass off the rest of our issues! And don’t drop a patient after a year and say, ‘Oh, it will get better in a year,’ because that may not be true. Those things are not helpful. Help us by trying things like different therapies and programs, or monitored exercise (if appropriate), and be more receptive to different things. And try to be more consistent about following up with patients/clients.”

“I didn’t go to the ER for my fourth concussion because I knew they would just tell me I’d had a concussion and that would be it.”

Headshot of Brandon

“It would be helpful if people understood that some days are better and some days are worse, and the predictability of what’s going to happen is very low. I know I drove my parents crazy! One day, I was able to go out, do a full day of school, hang out with friends, and be fine. Another day, I was awake for only two hours, then had to go back to sleep. Every day will be different and everyone around people with brain injuries should expect and prepare for this. And please don’t get frustrated with us!”

Headshot of Brett

“Medically, I still have questions. About my sleep being so varied, for one thing. Another thing I deal with is lack of control, whether that’s with anger, or eating too much, or not eating—you know, just a variety of things. And asking, ‘Is this normal?’ Although I have heard other patients say, ‘Yeah, it’s normal,’ it would be nice to hear it from a doctor sometime.”

“I think most people know what a concussion is, but don’t know that a concussion can lead to more severe problems, and it can lead to irrational behavior, confusion and severe disabilities. And I feel like if we were to have more awareness about what this is, [society would] be more understanding and more things would be in place. I feel like having more information and greater awareness of TBIs could help fill the gap that still exists. More awareness in work settings and schools too – not just college, but for children in elementary, middle and high schools.”

Headshot of Lauren

“It would have helped my family to understand from the very beginning that this was not just a minor issue to be downplayed. I think they would have been a more useful support system if they had known that it was a really big deal. And maybe that’s where that medical piece comes in, where doctors say, ‘Things really may be different for you now.’”

“I hope we continue to learn more about brains and understand that some people live with things we never knew they were living with (invisible injuries/conditions). I think it’s also important to have people understand and be educated. Imagine a world where everybody wears a helmet riding their bike, not just because they look so cool, but also because people want to take care of their brains! Where people don’t just pass you off because you say you have a brain injury.”

“It would be nice if my family could sit down [with the medical team], review the statistics, and the doctors would say, ‘This is probably what your child is going through. These are the ways you can help.’ That way, the family is not just hearing about the challenges from me, but the information is reinforced from the professionals that this TBI is a real thing and the struggles are real.”

“Patience is important. I think we tend to give up on people because we think they are never going to change their mind about how they feel (such as with denial and grief after TBI). But with patience and time, these feelings can change – don’t give up!”

“It’s huge to have someone initiate something for you and say, “Let’s just try and get you to the other side.”

Headshot of Brandon

“The morning following my back-to-back concussions in a football game, I had issues with cognition, walking and speech. When I went to the doctor that day, he said I’d be better in a week. Over the next few months there was little improvement. About a year later, I was still missing a lot of classes and was cognitively behind where I was before the injury. I have gotten better over the years, but I’m still not where I was before.”

“It was hard for my parents to understand what was going on during the first few months. The doctors kept saying there was nothing wrong! But my parents stood by me through the whole process, have been very helpful, and got me as many supports and resources as they possibly could. Also, I was able to say to my fiancée, ‘I know you can’t fully know what I’m going through, but just trust me that I know what’s best for me.’ And that has worked out well.”

Headshot of Brett

“I feel like it would have been more beneficial to my emotional health if I had known how challenging this TBI would be in the long-term. I wouldn’t be so down on myself when simple things that I do every day all of the sudden become difficult. Running into a situation where I’m totally fine one day and not the next is very difficult. It’s hard to accept. If I had been more aware that this could be a long-term process, I would have been able to give myself a little more credit.”

Headshot of Lauren

“I am more educated about brain injuries than probably half of the providers I’ve seen. Generally, it seems only severe brain injuries are treated with any type of weight. We need to have a middle ground. We need to have something for everyone!”

To healthcare and other service providers: “Please educate yourselves on brain injuries and listen to your patients! I know it can be difficult to listen when you can’t see anything physically wrong and the tests are normal. But I haven’t met anyone in the TBI community who is making things up for attention or any other reason. We’re just trying to find answers! Give us a little bit more of the benefit of the doubt, maybe even more than you think you should.”

“You never know the impact you are going to have on someone. It is so important that people care and take the time to understand. You could have a brain injury tomorrow, and then you will know what I’m talking about: It is ALL real!”

Headshot of Brandon

“I became more comfortable advocating for myself after one of my doctors told me that my TBI wasn’t going away, that it was going to be permanent. It was kind of a forced transition, one that I needed to make in order to be successful.”

Headshot of Brett

“My family and support system were the reason I was able to be admitted to a specialized hospital where I received treatment for my TBI. If I hadn’t had that support system in place, I wouldn’t have been admitted because they need to know that you are going home with somebody who can help you after being released from the hospital. Another patient I met at the general hospital was not able to be admitted to the specialized hospital because he didn’t have family. For me, having a family was instrumental in getting everything done to this point.”