No, Doc. I Don’t Have Anxiety – I Have A Brain Injury

by Oct 28, 2020Recovery12 comments

Hi!

I’m Sarah

I’m recovering from a brain injury. But there’s more to me than that.

Last week I saw a neuropsychologist. Living with an invisible injury, I wanted written evidence of my cognitive impairments. I was set on making a paper trail. I wanted solid evidence of my injury so I could show people when they asked, “Why is life so hard for you? Why can’t you drive? Or work?”

I took my notebook. It is filled with notes from past medical appointments. It is my memory bank. The neuropsychologist—taking notes of me taking notes—observed, “Isn’t that a bit excessive?” 

I explained note-taking is my coping strategy for living with amnesia. He doesn’t seem to hear and replied, “Are you doing this because you are anxious?” 

I jot down his response. NP asked me if I’m anxious?? I put down my pen, look him in the eye and say, “No. I don’t have anxiety. I have memory loss.” 

It’s only two minutes into the session. The assessment will take three hours. I put my trust in this medical professional to treat me fairly and without preconceived ideas. My gut feeling is telling me, Run. Get out of this room. So strong is my faith and need to make my invisible illness visible, I put aside that thought. I stay. Will I regret ignoring my intuition? 

The assessment begins with several picture card memory tests. Simple stuff. I think I passed. I have no idea. The neuropsychologist’s face remains deadpan. His voice is monotone. There is no warmth or joy in the room. I wasn’t expecting this. His coldness makes me feel un-human. 

“Tell me about some recent events,” he asks, switching tack. 

“Umm,” I stumble. 

I’m exhausted. My mind is a deep chasm. I search for information but I can’t find anything. 

“I don’t watch the news. The TV gives me a headache.” 

“It can be anything. What’s been happening in the world lately?” 

Lost for words I shake my head. “I can’t remember— I have amnesia.”

“Who told you you have amnesia?” he fired back rapidly. 

“I can’t remember things that happened. I’ve forgotten my childhood, where I went to school…” I trailed off. He makes a note of this. I looked into my lap. I wonder if he’s thinking what I’ve thought over the last two years, Who does a triathlon race and gets severe memory loss? As far-fetched as it sounds, it is my reality. I feel I have failed to convince him. 

 Next up are the mathematical questions. Last week I was grocery shopping. I stood in the baking aisle trying to add up the five items in my hand.  I could not figure out if I had enough money in my account for the purchases. The skill required for this task overwhelmed the little brain power I had. After ten minutes I dumped them and left. At school I was in the top math class. I never studied for exams. It came naturally. Now math could be a foreign language. 

As if on cue a vestibular migraine sparks. I ask my surprised assessor if I can lay down. I put my cheek on the couch arm to relieve the room spin as he persistently continues with the questions. I answer on repeat, “I don’t know. I don’t know.” I don’t care about the assessment anymore. I need pain medication. I want to get out of here and back to the comfort of my bedroom. 

In the follow-up appointment he agrees that I have a degree of cognitive dysfunction. My relief leaves quickly when he says, “As to the cause of your impairment, I can not pinpoint it. There is a possibility of a personality disorder.” I open and close my mouth. Finally, I gasp “Can you repeat that?” I write his diagnosis possible dissociative identity disorder in my notebook.

My medical file is cradled in his hands. He has all the information I sent him. On the top is the discharge report from the hospital and the diagnosis Functional Neurological Disorder (FND) from a neurologist who diagnosed me after a few minutes. He states his next words carefully, “You are a difficult case to categorize,” and pointing to the discharge report, “but you most likely have FND.” 

I say nothing. Instead I direct my anger into my notebook, jumps on the bandwagon!!!!!! 

“If I have FND what caused it?” I ask, keeping my scribbled rage out of sight. 

“FND is a diagnosis we give when there is no organic cause for brain dysfunction.” 

“Can you say I have it for certain?”

“It’s the only logical reason for your brain dysfunction.”

I try one more time, “Is there a possibility that there is an organic cause but I haven’t found it yet?” 

“Sarah, get real,” he sighs, closing my file in dramatic conclusion. “It’s been two years. You’ve had all the tests in the hospital. There are no more tests. Stop searching. Accept this diagnosis. Get on with your life.”

Later I pace up and down my granny flat. The diagnosis makes me so mad. I do not accept it. I wrote in my notebook: FND = cop-out. This diagnosis gives me no clues to why this happened and what I need to do to get my life back. I wasted two days pursuing a dead-end. In my bathroom, I scrunch my towel into my face and scream. 

Later, a report arrives in my inbox. The written evidence of my injury—which a few days ago—I was excited to document. I’m tempted to send the email straight to trash. The neuropsychologist writes: Sarah needs to do more rehab in order to get better. Under no circumstances do I support her application for the disability pension. 

I phone to ask him to clarify what I need to do to get better. How can I fund rehab if I don’t have financial assistance? He has no answer. I imagine him shrugging his shoulders. He ends the call with the same iciness that I felt in the consultation room. “You consulted me for my opinion and that’s my opinion.” I feel as if I’m stuck on the merry-go-round of the medical system. I can’t get better. I don’t know how. I don’t know what happened. I can’t get help. I can’t get off. 

I recall his words: “In all my years of practice, I’ve never seen someone with these results. You scored lower than someone with a severe brain injury.” What does he mean? Did he think I failed the test on purpose?

I feel like I’m making it up. He doesn’t believe me. 

I had told him during the call. “I was having a migraine. I can’t complete the test.”

“A migraine doesn’t affect this test,” he answered. 

“Yes it does.” 

“You may not even have had a migraine.”

“What… of course I had a migraine.”

“How do you know? 

“I do. You saw it.”

“You may not even have had a migraine.”

Infuriated by his condescending tone, I ask my last question trying to catch him in his illogical questioning “When I take migraine pain medication the migraine goes away, doesn’t that prove I have a migraine?” 

He pauses. The line went silent. “Sarah, stop. Listen. Let me explain something to you. Have you heard of the placebo effect?”

With his remark I switch off from the conversation. His explanation of my migraine is beyond insulting. Once again, I feel I’ve been tossed into the “too hard basket.” Why does it always circle back to me feeling as if I’m making this all up? 

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Sarah Rasborsek

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12 Comments

  1. Avatar

    Oh Sarah how awful that this psychologist treated you so badly! I would have screamed at him! I did poorly on my cognitive test because I was so nauseous and dizzy that I could not function. At least mine understood.

    Reply
    • Sarah

      Thanks it was awful.

      Reply
  2. Avatar

    What a jerk! Some of these medical people need specialized treatment! As in developing a personality! Empathy???

    Reply
    • Sarah

      I know, right?!

      Reply
  3. Avatar

    I can fully relate to all of this! One good doctor who is invested in the case and takes time to look into it and time getting to know the patient, and a doctor who is proactive is more valuable to me than anything else. It brings validation! To be heard! Why is it sooooo challenging or straight up impossible to have doctors be unbiased, or make up their mind on the diagnosis without fully listening to the patient first. Repeatedly, things are brushed off as “in your head” or “drug-seeking” to the point I’ve almost had to put on an act to get medication I know helps me! If I was moody as a teenager (like all teenagers) then got sick and have a brain injury from the illness—-that doesn’t conclude the diagnosis of bipolar! My brain is all over the place because it’s healing, and when I was a teenager of course I was hormonal and moody!! When the brain heals, weird things happen and it’s very different for each person! There is almost no financial assistance, to get disability assistance you need doctors willing to put up with all the paperwork, wait two years to see a judge, and no chance if you’re under the age of 40!

    At least someone out there can relate!

    Reply
  4. Avatar

    The vast majority of doctors have a severely limited knowledge and experience with properly diagnosing and treating most all kinds of brain injuries. And many of those same doctors have severe ego mania that will not allow themselves not to be right with their ignorance, not to mention their condescension and outright rudeness and lack of compassion for other human beings. Was that too harsh. At any rate, I think our expectations of what doctors are capable of is highly inaccurate.

    I know there is at least one doctor who is qualified to work with those with brain injuries. He has over 250,000 patient encounters with patients with brain injuries. Dr. Kester J. Nedd, DO is a neurologist in Doral, Florida and is affiliated with multiple hospitals in the area. He has been in practice for more than 20 years.

    Reply
  5. Avatar

    Oh wow, i just spent the morning researching FND as that is the last thing my neurologist suggested. she didn’t feel the encephalitis could have long lasting effects giving me symptoms 3 years later. *sigh* I don’t know how I feel about the FND, it certainly doesn’t help for treatment. It is a challenge to find doctors who will listen or connect the dots. at least I am an ND and have so many ways to support brain healing. Thank you for your post.

    Reply
  6. Avatar

    I am so angry, Sarah, – on your behalf – that i can’t even describe. I have had similar experiences and people like that doctor and the actual harm that they can cause is horrible. And it is a cumulative harm, too. To be honest, i feel like slapping him … and i am a pretty gentle person, generally. But yes, his attitudes and methodology are enough to make anyone scream. And he was full of shit. Or maybe just a vacuous wanker. Probably both. Discount him from your sense of self, take some time to get over it and move on and try again. From your words it’s clear that you are self-aware and definitely on the right track. As well as fluent in the directions of where you need to go. Don’t let bastards like that get you down or stop you. I honor your strength and resilience. Salut. (PS. You might enjoy a book by Richard Bach, called “Illusions”. It is beautiful and full of simple, but wonderful quotes.) I wish you well, Sarah.

    Reply
  7. Avatar

    I think that so many of the above comments say it all. Many doctors still do not know or understand the issues of brain injury. This particular “doctor” sounds like he needs a wake-up call. It is unfortunate that you had such a poor experience.

    I have had some poor experiences (with my son) with doctors. Even within his own GP practice there were some who seemed not to understand whilst others (one in particular) were so supportive.

    My son was so lucky to have been helped by an occupational therapist from a specialist brain injury rehabilitation service attached to a hospital specialising in brain injuries, and she referred him to a clinical psychologist from the same unit. The Psychologist really helped my son to come to terms with his injury and helped him to face an uncertain future with some optimism; just a little but enough to count.

    However, the lack of such specialised help meant that he was limited to only “short term” help. but it set him on a course to find help in the future.

    Hoping that your positivism and strength will enable you to find the help that you need.

    Reply
    • Sarah

      Thanks John, it’s hit and miss sometimes with medical professionals. Thankfully I’ve got others on my team who are 100% behind me.

      Reply
  8. Avatar

    Great stuff from you, man. Ive read your stuff before and youre just too awesome. I love what youve got here, love what youre saying and the way you say it. You make it entertaining and you still manage to keep it smart. I cant wait to read more from you. This is really a great blog.

    Reply
    • Sarah

      Thank you!

      Reply

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