I was sitting at my computer last night fully intending to write a post when I was informed that today is National Doctor Day in recognition of the service of physicians. At first I thought, “we officially have a day for everything,” little did I know that Doctor’s Day has been around since the early 1930s.
Then I remembered a post I wrote last year called “The Doctors I Won’t Forget” and thought it would be fitting to repost and update today for two reasons, (1) doctors can actually be helpful and (2) to bring light to the fact that there’s inadequate healthcare available for people with Cerebral Palsy, especially once they reach adulthood (if not earlier).
I don’t just have one doctor I won’t forget and the same goes for their assistants and office staff. I’ve had enough horrible and incredible experiences to be able to write several books on the topics.
I remember in ’08 when I was looking for someone who could locate (never mind treat) the source of my chronic pain. I went to one doctor who sent me to another. I loved them both and would have stayed under their care if I had more of a support system in place at the time.
Knowing I needed a stronger support system I set out to find new doctors like the ones who opened the door and showed me how badly I needed help, even if it wasn’t going to be coming from them (no matter how much I wanted them to).
I hit the ground running (figuratively) and had my 1st second opinion less than 24 hours after moving across the country. I should’ve taken my lost luggage as a sign that things wouldn’t go well, but this guy came so highly recommended (and I was too jet-lagged as well as ill) I didn’t even bother with second thoughts.
I should’ve had second thoughts. I should have run screaming out of the office when I was asked (more like forced) to pick the one part of my body that hurt that hurt the most by the radiology technician (because every joint below my belly button wasn’t a good enough answer).
He wasn’t the guy for me. I went home crushed and waited for my formerly lost luggage to arrive from Alabama, while wondering what the hell I was going to do now.
I went to another doctor that someone had heard about. He was great and I would’ve given him the green light but I was “too old” for him, as in “I’d really love to help you, but you’re just too old for me. I don’t see anyone over 15.”
I was 24.
I sat in his office for hours and everyone, except me knew this wasn’t going to go anywhere. I get that private practice is a business just like any other but you’d think someone would’ve said that there was no point even making an appointment.
But because I did like him, and I respected his opinion (because of his background) I asked if he knew of anyone that might be a good fit for what I needed. He told me to go see one of the top doctors in the state. I thanked him for his time (although I wondered if it was really a waste for both of us) and left.
I didn’t go see the doctor he recommended, because I had already seen him. I knew him well. I knew he wasn’t for me.
So I turned to the internet. Surely there had to one person on the entire planet willing to treat a young adult with Cerebral Palsy. They just had to be found, and I was going to do it.
I made more phone calls and a few more appointments. So many that I thought about seeing if there was a world record for the most 2nd opinions and if I was even close to that number (because everyone needs goals, no matter how strange some are).
Then I found a doctor who found one for me, because he was thousands of miles away (but at that point distance didn’t matter) and he knew of someone closer. I took the information to make an appointment but also laid the groundwork to potentially see the guy I found thanks to the World Wide Web, just in case.
I made an appointment not expecting anything to come from it. Why would I after all the appointments I had sat through and how they all ended?
I went thought the appointment, just like I had all the others. It was different but I knew not to get my hopes up. Then he left to review some things and came back to talk to me.
He wasn’t the right person for me either. But he did something every doctor before him didn’t do.
He told me what he saw and then admitted that he could do the job but he knew someone who could do a better job. He’d already called him and he’d agreed to see me.
And the rest, as they say, is history.
I learned a lot from that process but the most important thing I learned is that you don’t get to choose to be a professional patient but if you’re going to be one you have to develop a tough skin because you’re going to carry a few disappointments with you and those are going to affect how you interact with any other medical professional forever. No, I am not being dramatic, at all.
I can’t forget those doctors and I won’t let myself either. As horrible of a journey it was to get quality care they each had a part in shaping the person, and advocate, I am today. Although I won’t go so far as to thank them for it.
What doctors need to realize is that even though someone might be “just another patient” to them they’re not “just another doctor” to that patient, especially when you have a chronic condition with chronic misconceptions.
And that’s just one experience with one specialist.
I’ve been searching for a general practitioner, to no avail, and it’s not like my CP is so complex that I need a lot out of someone who can cover the basics.
The problem is there aren’t a lot of doctors out there who know about CP outside of certain specialties, and the problem is just compounded by adulthood. It’s not uncommon to disclose your full medical history and then be told that you can’t be seen by this particular doctor or see a doctor and just know things aren’t going to be a good fit.
To all the doctors (and aspiring doctors) out there thank you for answering the call to serve, or whatever called you to medicine. Please step out of the box and educate yourselves on the most common disabilities out there, even if they are covered in medical school. What you’ve been taught (or are going to be taught) isn’t enough. Even if you don’t know anything about Cerebral Palsy, or any other disability, that’s OK, ask questions, be willing to work with a patient rather than sending them out the door and wishing them the best.
*A similar version of this post first appeared on an old blog on March 18, 2015