Providing the Right Amount of Information

Our family has often hosted exchange students from Europe and Asia. Recently in one of the farewell meetings, our exchange coordinator staff person talked to the students about having an elevator speech to tell their friends and family when they returned back home. She said it is good to be able to tell a short story about all of the happenings in America, but to be sure to make it super short. She explained that not everyone wants to hear the details, and if they do, they probably don’t want to hear it all at once.

This got me thinking about my own advocacy for psoriasis and psoriatic arthritis.

What is my psoriatic disease elevator speech?

Being in advocacy and meeting senators and members of congress in Washington, D.C., It’s imperative that I have an elevator speech, too. Here’s the gist of mine:

Hi, I’m Jaime. I have psoriasis and psoriatic arthritis, which are chronic diseases that affect my skin, joints, ligaments and other parts of my body. I wasn’t diagnosed until three years after my son was diagnosed at age 4. His diseases are more severe than mine, and there are no cures, but thankfully, we’re both currently well controlled on medication.

That’s it?

It’s a good start, but it doesn’t even begin to tell our real stories. The ones that include the tears on whether your son will be confined to a wheelchair. The ones that talk about how angry I can get when my independence is ripped from me. The ones where we have to fight insurance companies for months while our diseases get worse.

The everyday struggles are left out. The true experience is missing. After more than 20 years of dealing with psoriasis and psoriatic arthritis in our family, this elevator speech reduces our struggles down to a mere footnote.

Why did I leave out the details?

Thinking back to the exchange coordinator’s advice and applying it here, most people don’t want to know all of the details or they might think are prying into your personal business by asking follow-up questions. It’s just too much information to process, especially if they have their own problems on their minds. That doesn’t mean they’re rude or insensitive. They’re human, too, and sometimes we just need space.

But if you are lucky enough to have a listener who wants to know more, they will ask questions to keep the conversation going. That’s when the real education and exchange of ideas happen. That’s when empathy and real understanding starts to take shape. Never underestimate the power of connecting with someone else who really cares about you. It might be the start of a long-lasting friendship and addition to your support community.

When should you share everything?

But here’s where that elevator speech won’t cut it: Advocating for yourself. Never be afraid to tell your healthcare professional ALL of the details. Sometimes it is the most innocuous symptoms that can mean the difference between getting to the bottom of a new problem or staying the status quo or even getting worse. Doctors can’t help if you don’t provide the specifics of when, where and how the new symptoms affect you. Problem solving and investigation is part of their job. If you don’t give them the details, their job becomes infinitely harder and you have a more difficult time getting better.

Be honest with your doctor. This is a must. It can be hard to tell them everything. You might be self-conscious and worry your doctor will think you’re silly or exaggerating. If you have a good doctor, then they will help you feel at ease and listen to you thoroughly. This is no time to skip the details. Be forthcoming with everything. If your doctor doesn’t want to listen, then consider finding one who will. You can find some tips on that in another article I wrote: “Communicate Better with Your Doctor.”

So, what’s your elevator speech and do you get to tell it often? Leave a comment and let the community know. You have at least one person listening and in your corner.