Getting a diagnosis can be a long and stressful process. Once the diagnosis is made, there can be relief (phew, I finally know what’s going on), sadness, grief, anger and a mix of many other emotions.
A diagnosis also can change how people see you. You go from being a person with interests, fears, aspirations to being the diagnosis or label.
In the advocacy work I do, I spend a lot of time talking about the need for going beyond the diagnosis. While the diagnosis is important to accessing care, and in some cases funding, it can also put people in boxes based on their condition.
While 10 people may have the same diagnosis, it will present differently in each person. It is this uniqueness and individuality that needs to be highlighted to ensure you or your loved one receives the care they need versus a cookie cutter approach.
As a parent of a child with special needs, I spend a lot of time explaining who my child is as a person. I talk about his personality, his likes, dislikes, his previous medical experiences (no you aren’t the only doctor he will see this month), and how best to interact with him.
I’ve learned from experience, providing insights into my child as a person, not just a label, has transformed many of our appointments. It reminds people to adjust how they interact with him to meet his needs, not their own.
For example, prior to a recent procedure, I talked with the medical team about the importance of giving my son choices. If you need to take his temperature, ask him if he wants it under his arm or in his mouth. Same goes with the oxygen monitor - let him choose if he wants it on his finger or his toe.
By giving my son choices, he gains some control of the situation. And it takes away some of the stress and anxiety for everyone. It also reminded the team they were dealing with a young child who is scared and overwhelmed, so be patient and go slow.
When we let highlight the person, not the patient, it helps in all areas of care.
Healthcare professionals and educators carry high workloads, and often aren’t able to take the time to get to know every person. They quickly scan a person’s record to see their lab results, diagnosis and treatment plan. While this may tell them a lot about the diagnosis, it likely contains little to no information about the person sitting in front of them as an individual.
I’m not saying you take your healthcare provider out for dinner and tell them your life story. Rather, it’s about spending 1-2 minutes talking about the person. If you’re the patient, let them know what worries you, how you react to procedures, what you are like going beyond the diagnosis.
Going back to my son, I always explain that he’s a quiet child whose super power is to not answer questions (as it’s one aspect of appointments he can control). Why is this important? So they realize he does understand what they are saying, but chooses to not respond. This is key to helping them realize he doesn’t not have mental delays (which is often assumed) but rather is taking control in his own way.
I urge you to also take control. Pull back the curtains and let people see the person, not just the diagnosis. If you’re scared or nervous, say so. If you want to have choices, let them know. Shine the light on who you are as a person to ensure the care you receive meets your needs, as much as is possible.
And if you really want a personal connection, take a moment to learn a bit about the person talking to you. By connecting as people we can slowly tear down the wall between patients and healthcare professionals.