I learned all of this the hard way while my doctor waited for an apparently magical two year mark to pass before he began to talk with me about available therapies and finally referred me to the local TBI Clinic.
Throughout the two years following my injury, I continued to talk to my doctor about my various symptoms and the standard response was that most of my problems would self resolve in time.
As we approached the two year mark, quite by chance, I ran across a BBC.com news article talking about mental fatigue after a TBI. This was my first exposure to any information on what I had been experiencing on a daily basis since my injury occurred. What I read changed everything.
Google, love it or hate it, enables us all. Finding information that we would otherwise have absolutely no exposure to lights the path to discovery and has the ability to change our lives. After reading this article, I began searching for more information on “post TBI brain fatigue” and found a plethora of information. Because I don’t read well these days, it was a slow but steady process each day to learn just a little more about this topic or to reread what I forgot from the day before.
One of the top informational resources I found was the Synapse web site. Synapse is an Australian organization whose stated mission statement on their web site is “Ensure the rights of people impacted by brain injury, by connecting knowledge, policy, services and systems.” The knowledge I gained from Synapse.org.au was a much needed jump start towards a basic understanding of TBI and what I was experiencing. The directory of available fact sheets is a great tool to get directly to the area of information needed.
Once I was armed with actual information, I put together a list of things to talk to my doctor about, for which he then referred me to a neurologist. This encounter was what finally put me on a path of recovery that included cognitive therapy, speech therapy, occupational therapy and physical therapy.
On a subsequent check in with my primary care physician, I asked why he hadn’t guided me in this direction sooner. His response was that relative to TBI, many things will heal of their own accord in the first two years and physicians wait to see what heals in this time to avoid “creating a patient”. Apparently, connecting a TBI patient with much needed resources too soon can cause the patient to engage the medical system for things that will heal on their own, so the preferred approach is to wait two years before talking to us about our options.
I’m not a medical professional, and I can’t say whether this is common across the medical industry or not, but I can share that I was rather disappointed with my own doctor in this regard. Was it the correct approach? I don’t know, I just know that I was the one struggling to keep my job and healthy relationships for the two year waiting period.
Be sure to ask your physician the hard questions. Compose your questions carefully and thoughtfully, write them down and clearly communicate both your symptoms and your concerns. Tell your doctor that you would like to know what options are available to you – especially for the symptoms that are causing you the greatest difficulty.
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