When Your Gut Speaks? Listen.
A year ago today I had an enviable view from my window, one that many are mourning the absence of this year. It was Commissioning Week at the Naval Academy and the Blue Angels were in the air, an annual tradition that excites the Annapolis area. I was close enough to the action to hear aircraft engines and catch planes occasionally streaking through the sky. The window was in a hospital room. It was the culmination of four days spent enduring a ball of pain in my stomach that felt like a cross between indigestion and a pulled muscle. As each day passed, a corresponding ball of anger took over my temperament, bit by bit, until my last act before I left for the hospital was to dump the contents of the two overflowing wastebaskets I’d repeatedly asked my teenager to empty all over her bed.
The pain started as a twinge in my stomach on a Saturday night at our neighborhood block party. I thought it was a minor protest from my body. I was in the middle of a get-healthy competition with some friends and took the evening off from carb- and calorie-counting. When the twinge morphed into a more consistent ache the next morning, I still probably would have written it off as a digestive issue, except for its location — my lower right abdomen.
That Sunday I took myself to a local urgent care clinic, alternately convinced I was making a responsible health decision and sure that the remnants of last night’s wine had turned me into a drama queen. I was even a little apologetic as I explained why I was there. A couple of pokes and prods and some normal labs later, and I was on my way with assurances that my appendix wasn’t in danger and a suggestion that I spend quality time with a bottle of milk of magnesia.
Monday morning my lower right quadrant felt exactly the same, but I pushed through with the two-part strategy most special-needs parents use when they don’t have time for a problem: ignore and endure. That worked, until it didn’t. I found myself simultaneously blinking back tears and delivering several swift kicks to our Roomba for failing to land in its charger. I called my primary doctor’s office and asked to see whoever was available. Another round of poke-and-prod later, and I left with an order for a CT scan, another theory about a GI disturbance, and a lot of worry about how I could fit the scan into my afternoon schedule. Client appointments could be rearranged, but the bus carrying Leah would arrive on time. And since ‘chronically understaffed’ has been our waiver norm for a couple of years, I also had no one to meet her.
That angst was funny in hindsight, because once I started calling for appointments, I was told the insurance approval process would take three days. Whatever time bomb was ticking in my abdomen, no one would be interested until Friday.
At the rate I was going, the Roomba was unlikely to survive that long.
Game plan
And then two parts of my personality went to war. On one side was the advocate who dislikes arbitrary ’nos’ from large systems, and thought the best way to tell my insurance company to shove it was to go directly to the ER. On the other side was the ringmaster of the teenage circus who knew that Tuesday would be a really, really bad day to do that. Too many clients on my schedule, too many moving parts, and not a good day for Mike to cover the home front. Since being a therapist involves a lot of sitting still, I reasoned I could push through and schedule my crisis for a better day.
That’s how a Wednesday became the day I drove myself to the hospital to Stick It To The Man. When you walk into an ER and say ‘pain, lower right quadrant,’ they don’t mess around. I had my CT scan within an hour and was scheduled for an appendectomy that afternoon.
Why does this belong on a blog about autism?
In between the Blue Angels fly-bys, I had time to reflect. If Leah had been the one with the ball of pain in her abdomen, chances are much higher that the problem would have been missed until it became dangerous. While mainstream medicine is finally acknowledging the high prevalence of gut issues among people with autism, and that gut problems are often a root cause of irritability and aggressive behavior in children with ASD, the discomfort people with autism convey through behavior is still too often dismissed as ‘just autism.’ I have zero communication impairments, and still, from Sunday to Wednesday, I visited three health care facilities, made multiple calls to diagnostic centers and insurance companies, tolerated a round of labs and plenty of tests in the hospital. (And let’s not forget the dumped trash and the abused robo-vac along the way.) Two medical providers got it wrong before someone sat across from me and said, “It’s your appendix.”
Most importantly, no one suggested that my complaints of pain, or my concurrent foul mood, were ‘just part of being a 40-something female.’ In four days, I experienced both solidarity with the many autistic children I know who have been diagnosed with comorbid GI issues, and a sort of survivor’s guilt that my problem was identified and solved after only four days and one laparoscopic surgery.
I guess the lesson, as is so often the case with autism, is go with your gut.