The Skills I Learned to Become a Good 'Professional Patient'

The world needs good doctors, but it also needs good patients. We are quick to blame doctors for breakdowns in provider-patient communication and interactions, but the street goes both ways. It’s your life, your illness and your responsibility. I’m not saying that’s fair, but sh*t happens. I believe it’s up to you to make the most of it. Being chronically ill is a full-time job, and like any professional job, certain skills are required. I’ve taken the skills I find most important and put them together into a “resume.”

If I was applying to be a professional patient, this is what my resume would look like:

Patient experience:

• Rheumatoid arthritis, 2009 — present

Having arthritis has taught me to slow down and to use my resources wisely. By resources, I mean energy.

Note: The diagnosis wasn’t official until 2012, but I don’t want those early years to feel like they don’t matter. 2009, I think you’re important. Even if I did want to punch you in the face sometimes.

• Gastroparesis, 2015 — present

As long as I can still have coffee and ice cream, I won’t complain. Besides, baby food has come a long way. Gerber Peach Puffs are addictive.

• Acid and non-acidic reflux, 2013 — present

I have both acid and non-acid reflux. Obviously I’m an overachiever by having both. #HonorsStudent

• Fibromyalgia, 2009 — present

Fibromyalgia has made me appreciate just how complex the human body is. Fibromyalgia is like The iCloud: We don’t understand what it is or how it works, even though we all pretend we do. The day I truly understand this disease will be the day I feel accomplished. On the bright side, doctors don’t seem to know a whole lot about it, either. It’s nice knowing I’m not alone in that.

Notable skills:

Multitasking. I can puke and drive like a champ. I can even do it without getting any in my hair.

Organization. No one can top my vitamin and prescription color-coding system. It’s impressive. You have to stay organized to stay ahead of the illness.

Working independently. By this I mean that I use WebMD to self-diagnose. I suppose that may be frowned upon by medical professionals? Maybe the better takeaway from this is that it’s up to you to understand your illness. Your doctors have many patients, but you alone are in charge of your health in and out of the medical office. Do your research, advocate for yourself, and be willing to fight for your health even when your doctor isn’t in the room.

Adaptability. I can get stuff done in pretty much any setting. This includes places like an ER waiting room, and curled up in the fetal position on the bathroom floor. I’m pretty sure I type faster while laying down. At least that’s what I tell myself. Learn to adapt your life to accommodate your needs. Your body will thank you.

Prioritizing. Chronic illness makes you rethink what it most important. I was in college in the early years of my arthritis. Beer, parties and all-nighters did not make it into the list of priorities. ​I’m great at keeping my priorities straight. For example, getting coffee is clearly more important than anything else that could be happening at 9 a.m. Honestly, I’m less likely to attack you if I’m caffeinated. So really, I’m drinking coffee for you. You’re welcome, world.

Consistency. My blood pressure is consistently fantastic. It’s unnatural how great it is. Even when I’m in the ER or mid-infusion, it’s still roughly 110/65.  Now that is a skill, y’all.​ In all seriousness, consistency and routine are really important to good self-management.

References:

Primary care doctor. I mean, this woman rocks. I like that she laughs at my jokes (even if it’s 90% out of pity) and frequently reassures me that it’s not all in my head. Sometimes you just need that validation, right? You need a good primary care doctor. If you don’t like yours, look for a new one.

Primary care doctor’s medical assistant. Despite me throwing up red raspberries in the exam room one time, she and I get along great. Also, she appreciates the fact my blood pressure is always fantastic.

Gastroenterologist. My favorite thing about her is that she will look up stuff on the computer with me while I’m there. She’s not afraid to admit that she doesn’t know something — and I appreciate that honesty. Also, it’s nice knowing I’m not the only person who uses Google Images to figure out what’s wrong with my fingernails (turns out it’s a zinc deficiency, in case you were wondering). The moral of this story: Remember that doctors don’t always have all the answers.

That one GI intern that I saw once and never wanted to see again. He may only provide a reference if for no other reason than he doesn’t want me to hunt him down and badger him about it. He didn’t laugh at my Doogie Howser jokes, despite looking like he was 12. If you don’t know who Doogie Howser is, you’re clearly not old enough to be my doctor. Again, if you’re not comfortable with a doctor, find a new one.

Physical therapist. I’ve been going to the same place for physical therapy since I was 15. I’ve been there longer than the current carpeting in their office. She can vouch for my long-term commitment skills. Physical therapy doesn’t necessarily improve my mobility — but it helps me maintain where I’m at. Sometimes, that’s all that matters.

Follow this journey on Funny Bones.

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