It seems like there should be some decisions a person never has to make for themself. Standing before the consultation window at the pharmacy, I found myself faced with a question that made me wonder: Is this a real question? Am I supposed to know the answer to this, too?…
I think I’ve fallen in a “Doctor Who” rabbit hole. If you’ve ever watched the show, you know the TARDIS, whose letters stand for time and relative dimension in space. On the outside, it looks like a simple blue British police box, plain and unassuming. But step inside,…
For many of us living with a chronic illness, there typically comes a time when we desire to share our story, help others, and dip our toe into the pool of advocacy. Having met thousands of people with lupus over the past 20 years, I’ve learned that we all…
May is Lupus Awareness Month, and for several reasons, Fred Rogers and his eponymous children’s program “Mister Rogers’ Neighborhood” are on my mind. Fifty-six years ago this month, Mr. Rogers provided testimony to the U.S. Senate Subcommittee on Communications seeking to protect $20 million in federal funding for the…
Like any relationship, a patient-doctor one has rules about how to engage and communicate. They’re typically in writing, bearing the patient’s signature of agreement. I’ve seen the rules posted on walls as the U.S. Patient Bill of Rights and Responsibilities, but there are also unspoken rules around trust and admiration.
If, like me, you have a chronic illness, have you ever sat with the thought that maybe you did something to cause it? I certainly have. Over the years, I’ve noticed that many conversations I’ve had with chronic illness friends landed on that question at some point. It’s that quiet,…
We’ve heard it said that “you can’t pour from an empty cup.” It’s a reminder to “fill” ourselves before we “pour out” for someone else. Pouring out is an action we do to improve someone else’s life. That improvement could be momentary or it could affect them for a lifetime.
Among the various time-management strategies is one where a person breaks up their day into 30-minute blocks and assigns tasks or activities for each block of the 24 hours. Some bullet journalists consider time blocking to be one of the most effective ways to stay productive. I tend to…
Have you ever hesitated before answering the question “How are you?” If the answer is yes, then I want to share something with you. Living with lupus (or any chronic illness) comes with unspoken rules that many of us feel pressured to follow in answering this question: Keep it…
It’s so easy to jump on the woe-is-me, this-isn’t-fair, what-did-I-do-to-deserve-this bandwagon and shout, kick, and scream at the awful “bad luck” and horrible timing of chronic, incurable sickness. Feeling like a victim and falling into grief can seem inescapable when unprovoked pain, flares of skin rashes, hair…