Welcome to the third of many posts related to Patient Worthy’s Video Series!
We had the pleasure of interviewing PW contributor Kathryn Ferguson, a mother and a wife, who has been diagnosed with three different rare diseases. Here, she compares a chronic illness to having a (REALLY) bad boyfriend.
“Chronic disease is like a bad boyfriend… When you meet the guy of your dreams and you think he’s fantastic and it’s all hearts and flowers, and then suddenly you realize this guy is a real loser… that’s kind of like what chronic disease is.
You start out in this body that’s beautiful, fit, and healthy– and you wake up one day and your body has abandoned you, and you are a train wreck.”
“And so you’re suddenly like ‘Oh my gosh, this is just awful, I need to get fixed, I need to fix myself!’ and then you realize ‘NOPE, I’ve got this broken body.'”
“But what you have is that your body has transformed into something you don’t recognize just like a bad boyfriend. Suddenly you’re stuck with this guy who you’re like ‘He doesn’t want to bring me flowers anymore and he doesn’t say nice things. He just doesn’t answer my texts and never shows up on time‘. Your body does [just] that.
So just like [having] a bad boyfriend, you make plans to go out with your girlfriends and five minutes before you’re ready to go meet, you start to have a flare of some kind in your body and you can’t leave to go out on this great play-date with your girlfriends. You now need to put on your pajamas and climb in bed, just like [when] your bad boyfriend calls you ten minutes before he’s supposed to pick you up and says ‘Yeah I can’t come.’
So that’s what it means with a chronic disease. It’s so unpredictable that you never know how you’re going to feel one day to the next, just like a bad boyfriend who you never know if he’s going to show up on time, if he’s going to dress appropriately or if he’s going to be kind. Your body is kind of like a bad boyfriend.”
“So I say that to my girlfriends,
“Listen, if I’m going to cancel on you, just think of it like I’m dating a bad boyfriend. My body has decided it’s going to roll up shop and we’re not going to be able to have a good time.”
Every one of your girlfriends, every one of the people in your life who loves you and wants only the best for you, is devastated that your body has failed you and it hurts them that they can’t fix it. Just like they can’t get you to dump that crummy guy that you’ve been dating, and so it’s painful for them. So they get frustrated that you’re still sick and you’re not getting any better. And you talk about how you’re going to this great new doctor and he’s going to make you better this time. And sure enough a week or two later, you have side effects from the newest drug treatment that you’re trying or the drug isn’t working like you thought it would.
And your friends and loved ones are devastated because they are, often times I think, more invested in you being well than you are because they want you back. They want the bright and shining person that they fell in love with and they see that you’ve changed. And as patients, it is our job to teach our loved ones how to love us.”
Editor’s Note:
Kathryn is an incredible public speaker and loves to share her story, “Everyone has a problem in their life, some are small, some peoples’ are big, mine is chronic disease. It’s helped me define who I want to be and where I want to go; how to get over the tough patches in my daily life. The tools I’ve used, someone else can use.”
Check out Kathryn’s blog, and keep an eye out for more about Kathryn on Patient Worthy!
