I saw a new neurologist last week.
I’ve developed a bad habit of getting my hopes up every time I’m schedule to see a new doctor.
I convince myself that this doctor is going to be the one who will finally take me seriously. That this doctor will finally be the one who stops “treating the pain” and starts looking for a cure. That this doctor will be the one who will finally help me.
I want to be cured so, so bad.
I’m not sure at what point in the journey of chronic pain you give in to the idea that you’re never going to get better — that this aliment is and will be a part of you forevermore. I’m honestly not sure if that ever really happens.
What I do know is that I’m not there yet.
I still cling to the idea that I might have a chance of getting better, getting back to “normal,” and going on with life as if this whole thing really was just one awful “learning experience” or something like that.
And thus, meeting a new doctor is such a cause for hope in my life that I’m anxious about the experience for days or sometimes weeks in advance.
I practice how I will tell my story to them over and over in my head. I try to find the right way to phrase things so that they will hear me, understand my pain and become as invested in my health as I am — as if the only thing standing between me and my physical well-being is the right combination of words.
But no matter how I tell my story, their response is always, tragically, the same. They glance at the heap of test results and case notes that now follow me from appointment to appointment — and decide that if all the other doctors haven’t figured it out, they probably won’t either.
Then they proclaim something along the lines of, “I don’t know what’s causing this. I don’t know that we’ll ever know. I think we should just focus on treating the pain.”
I was hoping for something different when I met my new neurologist this week though.
She’s a doctor at a university. She’d been referred to me by a pain specialist. And it had been my experience that the only specialist interested in helping me get to the bottom of my pain in the past had been neurologist.
Things started all right. She seemed at least willing to listen to my entire tale of woe. From the first horrible stabbing pain I had on Super Bowl Sunday, to the story of how I didn’t sleep pretty much the entire of month of April because I wasn’t on the correct combination of pills yet , to how I ended up in her office.
“I want to find a cure,” I said, laying it all out there. “I don’t want to be on pain pills for the rest of my life. In fact, I want my life back. I want to find a cause for this, and fix it.”
She nodded in agreement, let out a deep breath and said, “Well yes, that would be good.”
And I could tell, just by the way she said it, that she didn’t think we’d be able to find a cure. She didn’t think there was a way to fix me.
Then, I let out a deep breath.
The appointment wasn’t over yet though, and I hadn’t quite given up.
Next, she had me strip down to my pink underwear and a hospital gown, and sit on the cold exam table so she could test my reflexes and point a flashlight into my eyes. But she didn’t even bother to inspect my right ribs — the area of my body that brought us together in the first place — a bad sign for sure.
Then, we sat down to chat: me still wearing my revealing hospital gown, her still smiling politely.
She told me she wanted to run about 10 blood tests. She asked if she could test me for HIV, although it was a long shot. I said yes. She told me about something called an EMG test and we decided to do that as well.
And then, she told me she would see me again.
In four months.
That’s when I knew for sure. That’s when I knew she didn’t think there was anything she could do to help me.
Four months for someone with chronic pain is like four years.
“I don’t think there’s any reason for me to see you sooner than that,” she said.
As she walked out of the room, I started to tear up. I looked at my mom, who had been there the whole time, and despair filled my body.
I want to get married one day, I told her. I want to have kids. I can’t have kids when I’m on all these medications. I want to be promoted at work. How is that going to happen when I’m this sick?
What if I never get better? What then?
Then, I got dressed, we gathered our things, walked out of the office and before we even got to the lobby we were discussing which specialist to seek out next.
Crystal Lindell is journalist who lives in Byron, Illinois. She loves Taco Bell, “Burn Notice” reruns on Netflix and Snicker’s Bites. She also has been diagnosed with intercostal neuralgia, a painful disorder of the nerves running between her ribs.
Crystal writes about it on her blog, The Only Certainty is Bad Grammar.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.