People with brain injury who are highly sensitive to sensory stimulation (light, sound, touch, scent, etc.) face a horrible dilemma: be seen/tested by a doctor in an office/hospital that may very well harm them, or ask for accommodation to be seen, be scoffed at, refused, and turned away from medical care.
I know this from personal experience as well as from the experiences of the hundreds of brain injured people I have supported through email support ministry and this website. I will share my personal story here, but suffice to say the far too common response from doctors is both ignorance of brain injury and it’s realities and arrogance in denying service.
As a Catholic deacon, I used to attempt to serve at Mass at least once a year. I often took 3–4 days to recover after due to the scents and sounds (heater and air conditioning units in public building typically pulse horribly, blowing up in my brain). At one Mass, the priest forgot I could not have singing. Rather than kick in my adrenaline, I shut down. He did not notice and did nothing, but continue Mass. My wife wasn’t sure what to do (she knows now to just walk up and get me). So I stayed limp next to the altar throughout Mass. I needed months of recovery, and ever since, I have been far more sensitive to stimulation than even I was before. I have not tried to serve at Mass since.
For reasons I’ve yet to ferret out, my doctor, who specializes in brain injury, is requiring (before signing past-due insurance papers) that I see a neuropsych for 8 hours of testing and an ENT (ear, nose, throat) specializing in vertigo to determine if my vertigo is caused by ear or neurological issues and what therapies might be helpful or new. Sounds good on the surface, right? It seems reasonable to have current, objective data. But there are a number of problems:
- – Why hold my insurance paperwork (and thus disability income) hostage? “Liability. Too much liability.” was his answer. Why not give me a year to get the testing done? “Too long. Too much liability!” Never mind we have a number of extenuating noise issues happening in our town now due to flood recovery that I can’t be in town for and thus can’t be tested during. Absurd.
- — Simply entering most medical buildings I am greeted a wave of laundry and disinfectant scents as I approach from the parking lot. Open the front doors and I am hit by a wall of scents and the pulsing of the HVAC unit. That is with my ear plugs in and my Bose noise canceling headphones on. That’s an accessibility issue. — Any testing, poking, prodding, and other attempts to obtain “current objective data” are most like torturous to my brain — overwhelming me rapidly. — I have multiple tests clearly showing my vertigo is neurologically caused, not inner ear related. — 8 hours of neuropsych testing for me is the equivalent of testing a quadriplegic with partial use of their arms ten years after diagnosis to see why they are quadriplegic and how much use of their arms and hands they have now to have current objective data. How do you test this quadriplegic? Put them in a gym, take away their wheelchair, and expect them to go from station to station to use each piece of equipment to the best of their ability — all while constantly poking them in the head with high voltage cattle prods. Torture chamber. No thank you. Come up with a better way to test me.
Today was my ENT appointment. This is what we brain injured so very commonly experience seeing doctors and how we are responded to.
My wife worked with them to find the quietest exam room while I waited in the car. She walked with her hand on my back (which helps me mitigate the vertigo in challenging environs) to get me through the foyer and waiting room to the exam room. Still amazingly loud and pulsing HVAC, that I could feel on my skin as it pulsed, blowing up in my head. But quieter than what I’d just been through.
Wait a few minutes, and they take me through highly scented hallways with various and changing pulsing HVAC fun to get my hearing tested. The “sound” room also had a pulsing HVAC opening, so was far from quiet to me. The earphones I am supposed to hear sound through creaked and popped on their own on my head, and even more so when the wires attached to them moved. Sounds and speaking at various volumes through just one ear or the other happen — all challenging on my brain, while trying to listen to the beeps over or under the HVAC, popping and crackling of the room and earphones. The doctor later told me that room is quiet (no, it is not) and that I show low frequency healing loss. I doubt it. I think the more likely cause of me missing hearing those sounds is my brain injury and being unable to filter out background noise that the ignorant, arrogant doctor thinks does not exist.
My adrenaline kicked in heading back to the exam room when someone suddenly and urgently steered me a different direction because I went into a wrong room. That was it. I was done. Adrenaline and friends kicked in and I burst out of there in a rage, like swearing up a storm (welcome to TBI rage!). All before seeing a doctor.
My wife helped me to the car, then went back to see the doctor and explain things and ask for accommodation so I could be seen. She put me on a speaker phone call with the doctor. We explained my needs and he said he could see in his offices there. I said I was asking for accommodation, so I could be seen despite my disability, that I was like someone in a wheelchair asking for a ramp. “Absolutely not the same at all,” and refused to explain why it was different when asked. He said he would not take me as a patient (whew! I don’t want a doctor so ignorant and arrogant as that) but would provide referrals so I could be seen elsewhere.
I replied “Going from torture chamber to torture chamber to see which is less torturous does not seem the best way to go about this.”
His response? “This is NOT torturous!” When I called him on it, asking him if he had brain injury, he dug in his heels even more, interrupting every attempt I made (calmly, according to my wife) to ask questions (that apparently were threatening to him). The doctor was the one hot headed and not allowing me to finish my sentences or thoughts and just kept loudly repeating “This is a quiet office! Those things are not torture!” (update, I just learned from my wife that she was escorted out of the office at the conclusion of that call. My wife, the very picture of decorum and grace, holding a baby in her arms. This is a system unable to treat people with due human dignity.)
This is not a system capable of understanding, let alone helping heal, many of the brain injuries people have. Until doctors learn what it is to listen to a patient, be compassionate, and put the patient first, treatment for brain injury will remain tortuous and possibly even harmful. This is a sad and sinful state for our medical community.
I am done paying the price for seeing doctors without the doctors knowing. I no longer accept that I must be tortured to be seen. I require accommodation to be seen by the medical system and I will leave any situation that is overwhelming to me, just as I do anywhere else.