Medical Doctors: 5 Things Brain Injured Patients Wish They Could Tell You

Brain injury survivors often have words that fail us at key moments, such as an important doctor appointment. Could be aphasia, but sometimes stress/fear prevents the words to ever form. After interacting with hundreds of brain injury survivors (mostly encephalitis), these themes surfaced that BI patients universally mentioned as desirable for their clinicians to know: 

1. We don’t expect you to know everything – I’m sure you’ve run across patients that lack patience. They think earning a doctorate degree means you are now a God with all the answers. However, the majority of us do not believe that way … especially those of us with a rare illness that got a 5-minute mention in one of your medical school classes 25 years ago. We just want you to tell us when you don’t’ know. It really is okay to say, “I don’t know, but your experience is very real” and give us alternatives to consider. The most frustrating experience as a patient is when a doctor treats us like a “head case,” leaving us to believe we’ve created this illness due to psychological issues. 

2. Prompt us on logical questions that we are not asking – Often when we receive new medical information, we are trying to absorb it. Maybe the terminology is over our head, so questions don’t form. Or maybe it’s disturbing to hear, so we “lock up,” trapped in a state of fear. If we don’t ask questions that you think we should be curious about, please prompt us, even if it sounds so simplistic. Something along the lines of “Often people in your situation ask about …” or “A common concern is …” Chances are we’ll embrace the thoughtfulness and extra info. 

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How To Advocate for Yourself as a Patient

Becky Dennis:

7 tips for advocating for yourself

Originally posted on Becky Dennis:

Whether your issue is neurological, a joint pain or a fussy big toe, you are your best advocate. You have the experiential information required. It’s not up to your doctor; it’s up to you. Take charge in the lack of diagnosis and perhaps you’ll benefit from the lessons I learned the hard way …

Tip #1: Trust your gut and track symptoms (even the seemingly silly or insignificant ones)

  • You’re the only one who knows how you really feel … even if you can’t put your finger on it. Take notes to document the neurological phenomena (or whatever your issue is), including frequency, duration and severity. As embarrassing as it is, my problem solving was so damaged that I couldn’t figure out how to leave a grocery store. I’d stare at the exit and entrance signs … “well, I am entering the parking lot, so ‘entrance,’ right?!” I’d pretend to…

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Nurses: 5 Ways to Improve A Brain Injured Patient’s Experience

Whether our brain injury happened 5 years ago or 5 weeks ago, many of us are still coping with our new identity. The first moments at a doctor appointment are with you, who can help set the tone for how well we perceive our experience.  

Many of us have invisible residuals such as a greater effort to accomplish little things that used to come natural. Or remembering names. Or understanding what in the world these 8 new medications we’re taking are supposed to achieve. Here are 5 ways you can improve our experience when we have a doctor visit:

Tip #1: Tell us your name even though we see you a lot — Many of us are too embarrassed to admit that “yes, I see you often, but I’ve forgotten your name.” No need to be explicit, just work your name into the conversation and we’ll recognize what you’re doing. Maybe even write it down on the paper sheet covering the exam table like some waiters do in crayon on the paper “table cloth.”

Tip #2: Acknowledge the gravity of the issue – While we love to see and hear about improvement, many of us are dealing with a cruel, silent illness. We live in a dismissive world of people saying, “Well, you look fine to me.” Or “I forget things all the time, too.” For many, our forgetfulness happened overnight. Acknowledgement of the change as significant and severely frustrating as we have undergone is profoundly welcome and can help set a tone of understanding that makes the appointment more productive and less intimidating.  Continue reading

Proud to Support World Encephalitis Day

On February 22, join in the inaugural annual awareness day to connect thousands of people around the world, enabling a better understanding of the devastation that can be caused by Encephalitis.

Encephalitis is inflammation of the brain and can happen to anyone, anytime, anywhere, at any age. This brain injury can be triggered by many causes, including the cold sore virus, mosquitoes,  or auto-immune disorders. However more than 50% of causes are unknown. And there is no cure. This illness affects 20,000 people per year in the U.S. and an estimated 500,000 across the globe with a mortality rate of 20%.   Continue reading

5 More Tips for Employers Offering Employment to Brain Injury Survivors

Back by popular demand are 5 additional tips for employers whose courage leads them to engaging brain injury survivors in employment opportunities. Miss the first post? Find it here. Ever have a tragic incident in your life and no one calls because they don’t know what to say? Or they assume “everyone else” is there for you, so the phone still doesn’t ring? Many brain injury survivors live this on a daily basis. With these tips, you can make a difference in both their professional and personal lives.  

Like cancer, many aspects of brain injury are hidden. How do you help someone with brain injury such as stroke, encephalitis or TBI? People either don’t know what to say, so they say nothing. Or they don’t see the hidden residuals and assume everything’s okay. Through these very simple steps, you could be pivotal in creating a positive work environment for a brain injury survivor. Continue reading

5 Tips for Trainers with Brain Injured Employees or Students

Brain injury doesn’t have to be scary if you are informed. I’m not just an employer, I’m also a brain injury survivor, but thriving in the demanding corporate world. It’s not just possible, it’s achievable.

With returning veterans, an aging demographic, football injuries and epidemics like West Nile, brain injury is more common. More than 1.4 million Americans suffer brain injury of some form each year, according to John Hopkins. Many survivors have a host of residuals, including memory loss, cognitive disorders, balance issues, behavioral changes or vision issues, among a host of others. But it doesn’t mean that life’s over, nor being a contribution to the workforce. Here are 5 suggestions for working with those of us with a little extra challenge. Continue reading

Bring on the Complex Stuff, But the Easy Stuff? Forget About It …

Dispraxia Appears to Be a Common Acquired Brain Injury (ABI) and Encephalitis Residual

Five years post ABI, I’m amazed at what I still discover as residuals. For years, I’ve told doctors that the simple stuff is hard for me, but not until I’ve been able to document numerous stories have I gotten an explanation. Just a couple of weeks ago, the doctors put a name to this mind-baffling confusion I get in the simple things in life.

For those with brain injury, can you relate to any of these “simple” phenomena that occurred overnight? Here are a few that plague me …

  • Not remembering which finger to wear my wedding band, so secretly grabbing a peek at my husband’s finger and swapping hands while he isn’t looking.
  • Hanging up the phone and THEN saying “goodbye.” Continue reading

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