When you walk into a doctor’s office with acute symptoms, they want to know three things: What are the exact symptoms, what were you doing when the symptoms began, and how bad are the symptoms/pain (often using the ineffective 1-10 scale)? When you walk into a doctor’s office with chronic symptoms, they want to know three things: How long have you been experiencing this symptom, what have other doctors said about this, and are you mentally sound?
Through my many years navigating doctors and hospitals, I have found that using highly descriptive language is most effective way to express symptom severity. While I may be writhing in pain or nearly passing out from a blood pressure dip, I have to find the strength to describe what I am feeling. “What is your pain on a scale from 1-10” and “Why is your heart racing” are useless questions that the medical staff are told to ask. Instead of answering within their parameters, I either throw my unfortunately well-stocked medical language their way or use as colorful terms as I can muster. “The pain is in my upper right quadrant. It is radiating down my forearm and causing numbness in both the dermal and sub-dermal layers but the muscle is functioning normally” or “My heart is pumping so hard I can actually feel the individual thumps. It is making my breathing difficult and I feel like I have a racecar inside my chest”. This language seems to get the doctors’ attention. Sometimes they are annoyed by the lack of check-the-box words but most of the time they are pushed into actually listening.
Often, I don’t have the capacity to explain my symptoms, especially when it comes to pain. In those cases, I hope that my medical advocates (family, partners, trusted friends, even my primary care physician) are able to explain on my behalf. I know it is rare to have medical advocates, and there are times and places when I don’t, but cultivating a person or two with whom you feel supported can be an actual lifesaver.
Not only does that person add to your credibility with doctors, they can hear things that you may not catch whilst in the throws of a flare. Even if you don’t have a person to provide company, you should record your conversations with doctors. Let them know of course. At the very least, ask for a write-up of the visit or copies of your medical records to keep track of what doctors are putting in your file. Often there are notes on gender, personality, and physical assumptions. Once you see this, you can approach your next visit differently or even change doctors.
It also helps to get familiar with the scientific terms for your body and your symptoms. Learn what is happening in the medical world and find out if that information can actually help mitigate your symptoms or if further testing would just be invasive without yielding treatment options. Unfortunately, many chronic conditions and rare diseases are not a high priority for researchers. This is frustrating but important to know. If instead of dealing with your entire disorder a doctor can find ways to ease some of your symptoms, that is a small but real victory.
The sad truth is, if you are a female presenting with pain symptoms you will often be considered hysterical, weak, and hypersensitive. If you are a person of color, you will often be downplayed, dismissed, and considered difficult. If you are a man, you will often be told to toughen up. If you are a minority religion or LGBTQI, you will be held to the doctor’s belief system. Tragically, you have to fit a very particular and narrow set of standards if you want to be understood. This usually means putting on a show while you are feeling absolutely terrible.
Be friendly, but not too chatty. Be submissive, but use an educated authoritative voice. Be curious, but not questioning. Be clean, but not made up. Be honest, but don’t overshare. Explaining symptoms in a way that gets heard is a nightmare and it should not be a performance, but it is! I’ve had to put on this face in the emergency room while trying not to scream from pain. I’ve had to do it for specialist visits and as a hospital patient stuck with multiple IVs and tubes protruding from every orifice. I learned this trick a few months after I first became sick. At first, I didn’t know that I had to please the doctors and play the game, so I received terrible and dismissive care. I had doctors who told me that my symptoms were no big deal and that there was nothing they could do for me. After honing a medical personality, I finally started to see some positive movement. I let doctors think my ideas were theirs. I acted like they were brilliant and groundbreaking. Most importantly, I stopped seeing doctors who had no interest in helping me find a new normal.
My symptoms continue to ebb, flow, and change. Now I have the tools I need to make doctors listen, even if there is no cure for my symptoms… yet.