Meeting a new doctor can be good, bad, or indifferent. I try to keep my mindset for the occasion somewhere on the scale between going on a first date—and wondering if you’re going to run into your neighbor or Oprah Winfrey at the grocery store.
Will this be it? Did you make a 2:30 appointment to meet with the one person who will finally treat your condition successfully? Will he push past all the medical bullshit and finally give you a straight forward one-word diagnosis?
You have THIS and it can be treated like THIS and I have plenty of patients and experience with THIS.
Oh sweet, sweet dreams.
On the other end of the spectrum you could be meeting someone who, in the grand scheme of things is just a waste of time, but in the daily occurring of your life turns out to be a serious downer.
I don’t know what that diagnosis is. I haven’t heard of it before, so it must not exist. Have you been tested for celiac disease? Really? Maybe we should test you again just to be sure.
Last but not least, you could just meet a doctor who’s kind of blah all over. Yeah, he’s kind of heard of your condition. Sure, he might be able to adjust your dosage, but he doesn’t really have any suggestions for your but to keep doing what you’re doing.
Well that was a co-pay well spent.
Here’s a summary of my best and worst doctor’s visits.
The Best: I was nineteen when I was diagnosed with Primary Immunodeficiency Disease. I was seeing Dr. Hirsch, an infectious disease doctor in Fort Lauderdale, FL. It had been a long two years at this point. I was on a liquid diet, had a cough that rattled my bones, and was so ill and weak in the waiting room, I remember just wanting to lean down and fall asleep on the office carpet.
It didn’t take him ten minutes to diagnose me with PIDD, after going over my symptoms and rate of infections. By the second visit he’d gotten the results of my blood test and turned me straight around the minute I stepped in the door to go to the hospital and get my first IVIG treatment. I will always be grateful to Dr. Hirsch. I’ve met many great doctors since I first visited him, but he was the first to hear me, THINK, and run the right tests.
The Worst: I won’t slap his name across the internet, but there is a certain immunologist in Boca Raton who is on my shitlist. See, after my two rounds of IVIG at the hospital in 2009, I ended up coming back to my allergist in Boca and trying to treat my disease with allergy medicine and shots (protip: Don’t fucking do that.) After seeing that the treatment was not working, I started researching local immunologists and made an appointment to go see one.
I chose a doctor who was young, but had good credentials. During our appointment I took about ten minutes to explain my medical history, symptoms, and wanted to know his thoughts about whether or not I should get back on some form of immunoglobulins.
He said no. Instead, he suggested that I go on broad-spectrum, full-time antibiotics.
“Well, that would be great,” I said. “Except that antibiotics no longer work on me because I’ve been popping them like Altoids for the last twenty years.”
“Well,” he said, “what about just continuing to treat with allergy medicine?”
“I’ve been doing that for some time,” I told him,” and I have six current infections right now that aren’t being treated by that treatment.”
He seemed to get frustrated with my logic. “Well, what is your goal with your health?”
“I want to be able to go back to school and to have energy. I want to be like everybody else and feel as good as I used to.”
And then he said the words that, for all their truth, felt like the hardest someone could punch me, directly in the nose.
“Forget how you felt. You will never feel as good as you felt before. Your body has been through too many infections and has had too much damage and you will never feel that good again.” And then he took my files, wrote me a prescription for a new antibiotic and was gone.
I have to separate my thoughts on this into two parts:
1) He’s right. My body will never feel like it did before. I will probably never feel as good as the people around me do and I will probably never feel as good as I used to when I was a kid.
2) He’s wrong. My body may never get back to where it once was, but that doesn’t mean I have to just sit there and pop antibiotics until I die. There are always options. There are always alternatives, and there are always answers. Just because one doctor doesn’t have them doesn’t mean they’re not out there.
Sometimes we stick with a doctor for years and years. We like them because they’re friendly, they can always get us in for an appointment and they know our illness because they know us. But we forget that with chronic illness, getting stuck in a cycle of flair ups is actually avoidable. We have to push ourselves day in and day out to remember that the way you feel today isn’t good enough. You’re going to have doctors tell you in every stage of your illness that this is it! You’ve hit the wall, and you’re never going to get around it. When the truth is actually just that they, themselves, have run out of ideas and expertise. Don’t be afraid to acknowledge when your best days are still not where you want them to be.
Fight for, leave for, research for the fact that you can always feel better.
(Speaking of alternatives…stay tuned for tomorrow’s post about holistic and alternative treatments for chronic illness!)
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