Setting: New scene. Doctor’s office: very narrow, very crowded. To one side is a book case filled with books on chronic illness & childhood. There’s just enough space for the door to open, a patient to sit, a doctor to sit (at his moveable computer podium), an air vent to be on the floor behind him (usually with his briefcase covering it) and then a window to let in some light.

As the scene opens, the physician opens the door and motions the female patient to walk into his office. As they’re getting settled into their assigned spots, the conversation opens:

Doctor: I really like your bag. What’s on it? I don’t usually notice bags, but I really like yours.
Patient: Thank you. (Holds book bag up.) It’s pictures of old sewing patterns.
Doctor: Very interesting. I really like it.
Patient: Thank you. I made it myself. (thinks to self: This is the first time anyone’s noticed it even though I made it three months ago!!)
Doctor: Wow. Impressive. You have a second career right there if history doesn’t work out. Not that it wouldn’t or that we would need to talk about that… but very nice.

As conversation continues, move spotlight to stage left where another doctor sits at his office, sifting through information regarding the same patient’s case. (Be dramatic and use creative license.) On his computers are emails from the patient regarding inflammation, depression, fatigue, lack of appetite, together with his replies of suggestions of medical follow-up and symptom management. On his desk are papers from Australia regarding a new diet interspersed with papers on his main research topic: the esophagus. Throughout the scene, he continues to glance at the clock and the calendar, wishing that healing didn’t require quite so much patience. And, is there anything else he’s missing?

Move spotlight back to center stage:

Doctor: You’ve been diagnosed with Ehlers-Danlos syndrome, right?
Patient (looking confused): Yes?
Doctor: Given your symptoms… Other patients of mine who have this… There’s this paper that I was looking at earlier today… You have the diagnosis, right?
Patient: Yes, but it’s one of those that’s contested. Some people think I have it, some don’t.
Doctor: Either way, it might be helpful to have a term that connects all your symptoms together. And Ehlers-Danlos is systemic. It might explain the aggregate of your symptoms. But it definitely would be something you could give to disability services or other people at the university and they would understand as a tangible disease. It make might it easier for them to “understand” and then accommodate you.
Patient (not convinced): Ok?
Doctor: Let’s see. Here are some of the suggested lifestyle amendments: be active, proper sleep hygiene, hydrate often, high-salt diet.
Patient: Yes, those all sound familiar. They’re all things I try to do (in between all the other things I’m trying to do!)
Doctor: Why don’t I print this paper out? We can each read it, and if it’s applicable to you, if it resonates with your experience, then maybe we can use it as a way to deal with disability services. Plus, it might help with an actual treatment plan. Sound good?
Patient: I think so.
Doctor: I can write a letter (if we decide we need that) that says you have this disease. Of course, they may want a letter from a rheumatologist who actually specializes in connective tissue diseases, but I’m more than happy to say that you have this disease.
Patient: Thank you very much. I’ll read the article and be in touch.

Curtain.

This is more or less how my visit with Dr. Samuel went down today. I’ve been really depressed lately what with family visiting, church drama, fighting for anti-discrimination with the university (and losing), traveling, etc, not to mention medical stuff!! So we talked through all of that (it took forty-five minutes!) and then talked about bigger issues like treatment plan and advocating for myself.

Talking about sewing and hobbies at the beginning calmed me down a lot. It’s been really hard to juggle all the different things that I’ve been thrown this past month, let alone figure out what to do about it. It was nice to talk about something straightforward, something I already succeeded at, and something that was about me as a person. I love the feeling of connectedness that comes when I talk to someone about things I love (and when they truly listen), and I really want that in a doctor-patient relationship because I feel safe and cared for, just on a human level.

It’s a bit amusing to have homework from a doctor where I’m reading a medical paper on symptom management. But it reminds me that as a chronic patient, you become a member of the team. You’re not a layperson visiting a magician. You’re a team member contributing data and observations in a group setting where the medical professionals listen and assess. All members ask questions, all members suggest diagnoses. All members tap into their experience (whether personal or professional.) All members have work to do outside team meetings. And it all works a lot better if we know each other, just a little bit. Because we’re all in this for the long haul.

~Abigail Cashelle

P.S. I have to pick up Tabitha from the airport right now, but hopefully I’ll post a picture of the awesome book bag soon. 🙂

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