Seen, but Not Heard: A Patient’s Prescription to Physicians
by Troy Krombholz
When I walked into my first aquatic physical therapy session last year in January, I was dragging my feet. My chart explained that I had a rare connective-tissue disorder in conjunction with ASD, and that my overall physical strength was very weak. But as Ellen, my new physical therapist at St. Lukes Therapy asked questions, I could already see in her eyes that her gears were spinning. She was clearly on a mission to figure out how to improve my situation. Urgently.
I explained I had known my health was at a breaking point when I’d lost 30 pounds in just a few months. At six feet five inches tall, I looked like I was withering away and I didn’t know how to stop it. I couldn’t lift anything without a painful feeling of tearing something. Even lifting a drink pitcher from the fridge was too much. Within moments, Ellen began pointing to all the muscles I had pain in, recognizing precisely where it hurt. And she was right.
While my observational skills are acutely sensitive, my awareness of my physical needs is often poor, and Ellen knew it. As a person with autism, I can see LED lights vibrating, and feel electronic signals buzzing through the air. I feel sensations more intensely than neurotypical people, yet I tend to look past my own body. I learned that Ellen had previously worked with horses, so she was used to patients who couldn’t communicate their troubles. She explained that she’d learned over the years to watch her patients closely so she could give the best care, because words were not always reliable or even possible.
After one year and a half with Ellen, I have made the best progress I’ve ever had. She has taught me how to be stronger and be more attentive to my physical constraints and needs. But it was when she explained my particular disadvantage as a special needs guy that Ellen helped me most. “Troy, you have a more difficult challenge in getting people to help you.” I asked what she meant. She said, “People see a reasonably healthy, capable young man, and inaccurately assume you’re fine. They don’t see your ASD or connective tissue disorder at first glance so they assume that all is perfectly ok. This probably has always been a challenge for you.” She was exactly right again.
I sat there blinking at her. She’d seen my most challenging ongoing struggles and explained it to me so I could understand it. I felt wonderfully validated and seen in that moment and I understood the meaning of genuine care. Ellen has defined for me how a caregiver best helps patients by observing and listening well.
“I wish all caregivers had this same approach to health care. But sadly, many do not. Many are overwhelmed by the new stresses and pressures on the medical community in a post-Covid world. Constrained by insurance companies and handout lunches from Big Pharma, doctors can’t even eat and rest their tired minds during their lunch break. And when their minds are tired, they lose their capacity to help their patients. If it were up to me, I would ban pharmaceutical presentations at lunches for medical staff entirely. Let them recharge in peace and remember why they are really there to begin with, to help their patients have the best care possible.”
Doctors go to medical school to learn to help patients, maybe also to make a good amount of money, or even to earn prestige and status. But as a patient with a lot of special needs, it is incredibly disappointing when an arrogant doctor walks in, never once giving thought to what I might think. Perhaps my thoughts are less important or even have no value. But I am a person, aren’t I? Too many times I have gone to doctors for help and I have been seen but not truly heard.
I was fortunate to learn early on that when it comes to receiving good health care, we will often need to advocate for ourselves and those we cherish while seeking help within the medical community. When I was working on my Bachelor’s, my friend Drew went to the medical office on campus complaining of shortness of breath, fatigue, and overall malaise. The nurse had prescribed him some cough syrup and rest, assuming it was a common cold. Based on my own previous experience, I suspected the problem went much deeper, so I asked Drew to meet up at dinner to discuss it further.
“Drew,” I said. “I think you have a collapsed lung.” His face remained blank. Crickets. I should have expected it, but I did not. Of course he wouldn’t know how having a rare connective tissue disorder and being neurodivergent meant that I was familiar with the way that pain can fatigue my body. I’d also experienced a small upper lobe spontaneous pneumothorax earlier in my life. So, I decided to test my hypothesis called “The Waterfall Effect” on him to see if it would be accurate and work.”
So “The Waterfall Effect” is a sensation that I experienced with my former Upper Lobe Spontaneous Collapsed Lung a few years before. It feels like little trickles of water flowing down your back gently from the top (the side of the suspected collapse) starting near the middle shoulder and slowly running down the side of the ribs straight down the back. It is discovered by having the patient in question bend over and touch their toes and hold it for a few seconds, and then moderately quickly stand up straight tall again and see if they feel perhaps the Waterfall Effect. The effect is created when the partially collapsed upper lobe slides slowly down to its deflated position because it is not attaching to the top where it should. Based on my theory, my scientific guess on Drew was a clear yes! For me at least.
Because of our experiences and sensitivities as neurodivergent people we often develop a passion for protecting others, and all my warning lights were firing for my friend. So I convinced Drew to come with me to the hospital, and I suggested my suspicion to the doctor, that Drew might have a collapsed lung, and he smirked at me. They took Drew off to do an x-ray and when they came back, the report read no collapsed lung. I asked if they did an expiratory x-ray, which makes it easier to see the upper lobes, and they had not. We were sent home.
But I told Drew, “Your symptoms heavily suggest that you have a partially-collapsed lung, and based on my test with you, I think we should go back and try to get a different doctor tomorrow. Let’s sleep on it tonight, and I will come check with you in the morning.”
He agreed, and in the morning, we went back to the ER and as I turned around to sit in the hospital chair next to Drew, in walked the same doctor, with one hour left still on his shift. Gulp.
“Why are you back here?” he asked.
I said, “I’m concerned that he needs an expiratory x-ray. I believe Drew has a collapsed lung.”
Immediately he began to berate me in front of the others. “You don’t know what you’re talking about. Who are you to come in here to my hospital and tell me what to do? This is ridiculous!”
“Sir,” I said, “Typically you can only see this type if you do an expiratory image.”
He huffed at me, mumbled some other insulting words, and walked away.
After a while, the x-ray tech came and picked up Drew. I waited quietly with Drew’s parents who had shown up for support, or perhaps, that his friend was stupidly running up their insurance bill. Sometime later, the doctor returned and said that Drew was being directly admitted for treatment of an upper lobe spontaneous pneumothorax. He looked at me with a smirk and said, “Kid, you should consider being a doctor.!” He didn’t apologize for his berating me or rudeness. He just walked away, never to be seen again.
Doctors are just as susceptible to presumption and pride as other people, and perhaps more so for the way they’re often treated with deference as exceptional people. Most of them are truly brilliant and exceptional, but this doesn’t make them immune to errors of judgment any more than us. If they cannot listen and learn from others, their expertise is lacking in my tender opinion. I could have been wrong in my assessment, but I knew as a patient that we must learn how to hold doctors and health care workers accountable.
“To my dear hard-working doctors and medical staff, please listen to your patients’ thoughts. And please be especially patient with the special needs community when sometimes we have trouble forming our thoughts correctly. We all have value as human beings, and that requires a special sort of gentle, professional health care in the patient room.”
Before working with Ellen, I’dbeen to a myriad of physical therapists over the years, some of whom watched television while the patients did their exercises. I’ve been faced with many doctors who didn’t and wouldn’t see my concerns or listen to my thoughts, some who never even asked. I’ve felt invisible by those who never looked at me past their computers. Surely, we can do better than this. We must! No matter how complex the needs are, a patient is there to be given care. Your achievements in health care require the best of your abilities. Did you forget your oath?
Sometimes we must be willing to get bold about the things in the world that are wrong, and use the tenderest words, hoping that what we say will break through the rigid routines and constraints and accomplish good changes. We must have more conversations about the things in the medical system that are wrong. Meeting, talking, and intently considering the malnourished doctor/patient relationships in the autistic community and greater disabilities community is urgent work. It’s an important conversation!
That’s why I’ll risk being obnoxious and redundant to shine a bright flashlight on this matter. I want to be lovingly clear: Doctors, please, we (your patients) beg you to remember why you have chosen to be caregivers to begin with. Please understand your special needs patient may be in sensory overload from having waited or walked through the noisy lobby with people and televisions having their own noisy problems. Consider quality of life and how people living with disabilities can improve theirs. Please be patient when their thoughts are scrambled and it’s hard for them to explain. And give real care to your patients. If you cannot, then you are not a real caregiver.
And for my special needs family, if you feel you’re not being heard or helped, please speak up and be persistent. Don’t go to your appointments alone, but always go with a friend or family member who has your best interests in mind. Take notes on what the doctor says, and write down your thoughts and questions ahead of time. Navigate the experience calmly so that you can better explain yourself clearly. And always use kindness as you pursue quality care, wherever you live. Everyone could use a smile.
“It’s time to be seen and heard, so let’s get smarter about this pervasive problem and start helping each other do more about it. The medical industry is not here for the doctors, it’s here for the patients. With good care, patients can achieve optimal health and be helped to find their purpose in life, too. So, thank you to the good caregivers out there who still love their work and their patients.”
I hope someone gives you a hug today for all of your hard work. Thank you! Keep up the jolly good work!
About the author
Troy Krombholz is a published author who focuses his content on visual storytelling. He also writes original music as a composer, performs as a concert pianist, and is an award-winning nature photographer. Troy is also a speaker and activist for Nature Conservation and Wildlife Protection. He also lectures on Autism Awareness and strives to see Educational Progress and Advancement for Adults and Children who live and struggle with Autism. Troy is married to his lovely wife Susan, and they have 2 wonderful sons. They reside in the Smoky Mountains of East Tennessee where he and his family spend most of their free time hiking, picnicking, camping, and enjoying the captivating beauty of the mountains. On most of his evenings as the day closes, Troy can be found sitting at his piano expressing some of his feelings through music.