Sept. 11, 2013, 1:10 p.m.
Alone and in groups: Finding a doctor with an invisible illness
M - Words: 1,357 - Last Updated: Sep 11, 2013 Story: Complete - Chapters: 15/15 - Created: Aug 24, 2013 - Updated: Sep 11, 2013 83 0 0 0 0
It was too bright.
Kurt didn't want to get out of bed. He stubbornly squeezed his eyes shut against the offensive 9AM sunshine.
Why should he bother? What would get him out of bed this morning? Should he wiggle his fingers and toes until his brain started waking? That worked sometimes. Should he force himself into the shower and use cold water to get himself going? Maybe coffee? He needed a spark.
Not just a spurt of energy, but a real concrete spark that would ignite and become fuel to push him through all the mornings like this one. He wanted to be propelled out of bed, anxious to take on the world one-handed, with his other hand in Blaine's.
He imagined what it would be like if Blaine was next to him right this instant, in his bed, the remnant of a nice dream showing in his sleepy smile. Blaine wasn't a spark, though. He was a warm, comforting wood burning oven that was enchanted to stay on all the time. Blaine was a campfire, a little unpredictable but essential to the experience.
Shit, he had group today. He sat up quickly and checked the time. He could still shower and make it if he hurried.
---AAIGAAIGAAIG---
Group felt different without Blaine, though no less welcoming. The room had become a comfortable space with its mismatched chairs and warm presence.
Emma's due date was fast approaching, and Kurt selfishly hoped that she wouldn't take too much time off. After carefully lowering herself onto a large, cushioned chair, she began.
"Welcome," she said. "Today's topic is how we relate to our doctors, massage therapists, dieticians, and any health professional that you count on. I will begin with a story."
"I have a psychiatrist that I love, that I have been seeing for 8 years. I like her because she speaks to me more like a human being than a subject in a clinical trial. I think for people with a chronic illness, it is important to find doctors that let us in on the decisions about our healthcare. The doctor I had before her refused to change my medication, despite side effects that were interfering with my life."
"Your activities of daily life, you mean," Deera interjected with a chuckle.
Emma smiled back. "Yes, it is definitely important to learn the medical terminology since a lot of doctors aren't very good translators from medical speak into English." After a reflective pause, she asked the group, "What are some qualities that you liked and disliked in a healthcare professional?"
Deera jumped in. "I like when my doctor doesn't give me a hard time about medical records." The entire room echoed various version of yes. "It's information about my body, so don't I own it? Why do I have to pay 50 cents a page to get it photocopied and given to me?"
"I see where they are coming from, though, " Quinn said, "like they don't want people to misinterpret things."
Artie shook his head with a scowl. "No way, that's not why they do it. It's because they want to be able to talk about patients behind our backs. By making it hard for us to get a copy of what they write, it's easier for them to write things like 'noncompliant' and 'hypochondriac.' Every rule in place is to protect them, not to protect us."
Deera put a comforting hand on Artie's shoulder as she nodded. "You're completely correct about that. We need to find doctors who treat us like people, not unreliable children who can't handle information. I think the only way to find someone good is to get a recommendation. I guess it's possible that you could randomly go online and search for someone, you might get lucky."
"Or you could get unlucky," Artie added.
"I got a recommendation for a good one," Kurt said. "It was from a family friend."
"Does he take insurance?" Artie asked.
Kurt flushed. "No."
Sugar, who had just been observing until now, decided to speak up. "No one good takes insurance. None of my doctors do. They don't have to because they're so good. They have plenty of rich patients like me who will gladly pay out of pocket. I mean come on, who would deal with a health insurance nightmare if they didn't have to?"
Everyone was struck silent for a moment. Sugar had said something lucid and intelligent. Not even Artie could argue with it.
Emma nodded. "That brings up a good point. Another thing I liked about my interaction with my doctor is that the insurance claims were done for me. The office staff are competent, and the manager keeps everything extremely organized. Something I like to tell my patients who are feeling overwhelmed with their healthcare is that nobody who's sick is equipped to get proper care. It takes energy and skill and persistence.
"That's why it is a good idea to have an advocate ready to fight for you in those situations. If it means calling up the health insurance company and being patient with talking parrots for two hours, or driving over to the doctor's office when they won't return a call, your advocate should be able to do it. In a similar way, all of you have the opportunity to be the advocate for someone too."
Kurt nodded as he listened, the flush on his cheeks diminishing. He wished Blaine were here to listen to this.
"You are all becoming equipped to be expert health advocates. You can do this for a family member or a friend when they are sick, and it is just as helpful as bringing over homemade chicken soup. As you live with a chronic illness, you learn a lot of valuable skills. You learn to ask doctors questions and then follow up questions.
"You learn how to ask for a sick-appointment instead of a well-appointment so you don't have to wait three months. You learn that being pleasant and persistent with administrators is the only way to get the doctor on the phone.
"We have gotten a little off track here, but I think that's okay. Has your experience been like mine? Have you learned things because of having a chronic illness? Lets go around. Kurt?" She looked to her left and gestured that he should start.
"Definitely," he said, "I learned how to look up manufacturers of generic drugs and talk to pharmacists about which ones they use. With some of the meds I take they aren't supposed to switch manufacturers." Kurt looked to his left.
"Yeah, me too, I guess." Quinn didn't sound quite as convinced. "I learned how to be insecure without showing it to the outside world. And how to talk to my acupuncturist about meridians and chi, I guess."
Deera spoke next. "I have a better understanding of how the entire medical system works, to be honest. I know all the abbreviations and the diagnosis codes, I even got myself a few medical textbooks and dictionaries. The medical language isn't a secret if you learn it. That's what Amazon is for." She glanced at Artie, unsure what to expect.
"Well," he said, scowl still on his face, "the most I have learned is that people are arrogant and inconsiderate, and can't handle anything that deviates even a little bit from their own reality. So I learned how to lie about my health without feeling any remorse."
Kurt look right at Artie. "Good, don't. You shouldn't feel bad about doing what you have to do to survive."
The rest of the group consisted of stories about telling a doctor "you're fired" when necessary. Kurt felt completely rejuvenated. When he saw Blaine waiting outside his apartment on the steps, he grinned and said the first thing that popped into his head.
"You are my favorite."