A Patient’s Perspective: Real-world Patient Engagement

Be an engaged patient if you want to win against your chronic disease.

Or so people keep telling me.

When I hear people say patients need to speak up, be assertive, get engaged, I want to scream. I grant you there are patients who are quiet, but have you ever considered they might be frightened, overwhelmed, in pain?

Here’s the thing: I like to win. I like the challenge. We are not talking about just a game or a series of battles. This is my life. This is the quality and length of my life. I’m not offended that my health is relegated to a series of battles so much as the smug, righteous, dismissive, know-it-all attitude I encounter time and again.

As if dealing with a chronic disease weren’t enough … but I digress.

It is not helpful to tell me to be more active, eat better, sleep regularly.

It is not helpful to tell me to try to take fewer painkillers, more natural supplements, or mediate.

It is not helpful to tell me to be more assertive, more knowledgeable, more engaged.

It’s not like I didn’t have a life before my diagnosis. It’s not like I didn’t gain experiences, education, or know how to stand up for myself before my diagnosis. It’s not like I suddenly have nothing to draw upon other than the advice of people who enjoy healthy privilege and yet are so quick to tell me how to do this engagement properly.

You, the healthy privileged (those not living with a chronic disease) certainly don’t get to chide me to be more engaged as a patient.

First off, you don’t get to do any chiding at all. There’s more than enough blame, shame, and loss of dignity as a chronic disease patient. We get blamed for not taking our meds even though they make us sick. We get shamed for not getting out of bed to exercise even though we can’t stand up without falling over. We take body blows to our dignity every time someone sees what our disease has done to our bodies, our minds, our sense of self.

Second, you don’t get to give me a list of what I need to be doing if I really want to help myself. I get that some experts have a wealth of experience and education that can help. But that’s the key here … help … not fix … not be the only voice of wisdom and experience. We are individuals, not a general statistic. We are not a single course of presenting of disease, treatment, or anything at all.

But most importantly, you don’t get to tell me what it takes to be engaged.

There’s a reason we are quiet …

There’s a reason we are reluctant to ask our questions …

There’s a reason we are slow in answering your questions…

Fear. Shame. Doubt. Pain.

What would we be frightened of or overwhelmed about? It’s a long list … the diagnosis, the prognosis, the changes, the loss of friends, the next surgery, pain that will come back … even speaking up and losing access to a specialist because we have dared to challenge their authority, had the temerity to disagree, or demanded to know more or have further discussion.

And don’t underestimate the chronic pain … ask anyone that’s had a kidney stone .. now imagine that level of pain over and over … at any time … for as long as you live. If you’re not afraid of that … tell me how you do it.

Consider this: We get ourselves out of bed. We get ourselves to the specialist. We wait in a crowded, uncomfortable, germ-infested waiting room sometimes for hours. We get told we can only speak to the specialist for a few minutes and on a single issue. We get asked repeatedly for the same information every visit … sometimes twice in the same visit. We get told to do what is good for us because the specialist knows best … based on their experience and not nearly enough time with us, the individual.

Fact is, we don’t get a lot of time to be engaged. We don’t get a lot of time to do anything with the sheer volume of information thrown at us with very little time to absorb, let alone ask questions. We don’t get a lot of time before we have to start the whole process of going to yet another expert … another long wait …

I have no trouble taking the time and expending the energy to describe what is going on with me to my healthcare team, but I will not be quiet when I am ignored, dismissed, or mistreated.

I have no trouble taking responsibility for my disease, but I will not take the blame, shame, or loss of dignity without pushing back.

Remember, until you walk in another person’s shoes you will not see it from their perspective, not really. Telling patients to be more engaged does not absolve anyone from the responsibility of stepping up and hearing what patients really think about engagement, what they really need to be engaged, or what they really need at that moment.

At this point in my life, I still enjoy playing to win. I am by no means done. I am, however, angry, frustrated, disappointed, and not willing to stay quiet about anyone telling patients they need to be more engaged if they want things to be better, or even if they want to be helped at all.

It’s not about giving me better information … it’s about using the information you already have available.

It’s not about getting me better tools … it’s about asking me what I need before you build it.

It’s not about telling me what I need to do to be engaged … it’s about using the level of engagement that I am capable of at the time you see me.

You want to talk about patient engagement?

Try being a patient first.