The emotional scars of medical treatment with zero answers
I’m feeling angry, frustrated, sad and afraid. I’m trying not to cry as I write this. I’m writing this for two reasons. It helps me understand my thinking and feelings better when I write them out. I also want to help others who experience this to feel seen.
If you experience medical trauma, you know it can show up suddenly and overwhelm you like a flood.
This past weekend was particularly difficult, with a combination of back and leg pain with extreme fatigue.
After waking from a nap last evening, I noticed it was past dinner time and I was feeling hungry. So I decided to go downstairs to make myself something to eat.
It took all my strength to fumble down the stairs and into the kitchen. As I stood in front of the fridge, winded and mentally foggy. I felt so weak I could barely stand, let alone make anything.
My family was right there, and I could have asked for help. But I’m so sick and tired of needing so much help, all the time. I was feeling guilty for needing so much, and like I’d burden them by asking because they were relaxing in front of the TV. In that moment I was fed up.
When it becomes too much
I went back to bed and began sobbing from the intense frustration and helplessness I was feeling.
My wife entered the room at some point and asked me what was happening. The crying became more intense as I put words to the feelings.
“I’m terrified,” I began. “All they do is charge me thousands of dollars on all these tests and they never find anything. I just keep getting worse and I have no idea what the future holds for me.”
I was focused on the EMG I was to undergo the following morning (this morning). An EMG involves sending repeated electrical shocks down my leg to see if the nerves are conducting nerve impulses the way they should be.
I’ve had this test at least 3 times before, each time the results showed nothing wrong.
The last EMG I had lasted 3 hours as they checked all 4 limbs. Electric shocks, over and over, stronger and stronger as they look for nerve problems. I was physically and emotionally exhausted after that. I felt like I was submitting to torture, only to have the results come back – normal.
It’s easy to feel unseen, unheard and alone when the doctors keep saying they don’t know why, and therefore have nothing to treat. All the while I’m questioning whether its actually in my head.
So last night, I began feeling helpless as I imagined enduring another 3 hours of that pain, on top of the pain I already have. Only to be no closer to an answer.
It felt like Einstein’s definition of insanity – doing the same thing over and over and expecting different results (See Note).
Living in a country with a capitalist health care system has left me with crushing medical and personal debt. My ability to earn what I need to overcome it, depends on my symptoms being managed well enough to function.
They aren’t well managed because the doctors can’t find an answer that fits their paradigm. I have Multiple Sclerosis and Hypermobile Ehler’s-Danlos Syndrome. They have overlapping symptoms so deciding what to treat has been a problem.
The closest EDS expert my Neurologist recommends is a 4 hour drive away. I can barely get out of bed anymore let alone withstand a 4 hour drive. A flight would likely be even worse.
My condition has been declining for years, and since December has been picking up speed. My back and leg pain has been unmanaged for two months, and I feel like I just get to feel miserable while my doctors scratch their heads.
As my legs become weaker, my house is becoming increasingly unsafe for me. Especially walking up and down the stairs.
There are no resources to help me get the accommodations I need because I’m in the income bracket where I make too much to qualify for government help. Private organizations say I make to much as well. But I don’t make enough for the thousands of dollars it would cost to pay out of pocket.
I’m between a rock and a hard place that keeps getting tighter. I know I’m not alone in this because I’m connected with online communities full of people with this experience.
Finally, An Answer! Kind of.
I experienced tremendous relief when the tech told me the test would only take 30 minutes. My doctor only ordered the test for my left leg, which has increased foot drop since December of last year.
The good news is, they actually found something this time – neuropathy. I’ve had all the symptoms for the past 8 years and only now has it shown up on one of their tests. Now they get to figure out WHY it’s happening.
This means more tests, more money, and more calls from debt collectors. This is a part of the medical trauma in my experience. It’s common in the U.S. for people to have to choose between medical treatment or paying the electric bill. What kind of inhumane, profit driven selfishness is this?
I’m home, in bed, writing this before taking meds to calm things down enough for me to rest and recover from the emotional battering I experienced last night.
If you know me, you know I’m solution-focused the majority of the time. But there are times when my carrying capacity is exceeded and I collapse under the weight.
I’m only human after-all. I always find my way back to being driven by my blessings instead instead of my burdens. I just need a little time.
Note: though this quote has become synonymous with Einstein. It actually originated in a novel by Rita Mae Brown. Yes, I live with autism and often obsess over details.