What Patients Want

I recently attended a conference that I really enjoyed. But one thing that struck me as a little discordant was that panelists and speakers seemed completely baffled about what patients want. The way they spoke about us reminded me of how biologists speak about a newly discovered species or astronomers talk about a newly discovered comet or asteroid. They are curious about what they will learn from it, but it is a complete unknown.

I could understand these speakers’ confusion but for one thing. Almost half of Americans have at least one chronic condition. Do they all have less than two friends? Or, more likely, have they never turned to a friend with a condition and asked, “What do you want?” or “What makes your life difficult?” or “Living with this condition, what would your ideal world look like?”

Not everything has to be or can be verified by a clinical study, especially something so subjective. But since studies are so much trouble, maybe I can help them out.

We want to be normal.

What does that mean, though?

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Well, it’s a little bit like that burning need most of us felt as kids in school. Many of us spent our childhoods and teenage years desperately wanting to fit in before we realized that our differences make us special. (I have recently been talking to the kids in my family about embracing their inner weirdo.)

As adults, it’s about feeling normal. Everyone’s normal is different. For me, I know I will never wake up again feeling healthy. It’s been so long, I don’t even remember what that feels like. But I can tell by how I feel whether it’s going to be a day when my conditions are behaving or not. I accept that and have ways of dealing with it.

Days like that should be minimal, but for so many of us, they’re not. Things, often fixable things, get in the way or make the everyday hurdles even higher. For example, why have insurance companies done away with senior account managers? I am fairly certain that if I could have dealt with just one person from my carrier who knew my case, it would not have taken two months to get my last insulin prescription filled.

Whether it’s because your relationship with your provider hinders conversation about your challenges or insurance doesn’t cover the best treatment for you or you have to call the insurance company four times to get approval for your treatment and then they still don’t cover it, or something completely different, there are a lot of systemic roadblocks that seem to exist just to make our lives harder.

For many of us, it’s not the conditions themselves that have us so tied up in knots, it’s the inability of our expensive, first world system to give us the best shot at life. Who knows, maybe one of us chronic kids may have cured the common cold. Maybe we would be on Mars by now. Maybe we would have had a political leader that could bring us back together as a nation. If only we hadn’t had to spend so much time figuring out how to live.

All we want is to look at our cubemates whose lives we perceive are steaming along on an even keel, and think we can get there, too. Is it so much to ask to want to achieve what we know we’re capable of? So, when folks in a position to overhaul the system, ask us. We’re here and happy to help. I think you will find that, in fact, good health is merely the tool, the one we need to live the lives we deserve.