As a child, I didn’t have patience.
I certainly had the aptitude for it (for example, when I would dangle myself from a doorknob for 30 minutes or so at a time because I wanted to go somewhere that my parents weren’t planning on taking me), but I didn’t practice it. I was a tantrum-throwing maniac, and if I wanted something, I wanted it. Period.
Then I hit my teen years, and I remember recognizing toward the end of those years that patience was one virtue I just didn’t have. So I prayed for God to teach me patience.
As you probably know, God answers our prayers in unexpected ways sometimes…and he answered my call for patience by making me a high school teacher for six years. I’m not kidding, y’all. There are few ways in this world to build your patience better than being a teacher.
As it turns out, I’m really glad he presented me with those lessons in patience. I’ve needed them many times in my adult life, but never more than when PI-IBS struck my digestive system this February. Patience has served me well in many scenarios over the last few months:
- When someone who knows nothing about my diagnosis and who has never, ever experienced anything like it presents a “miracle” treatment, diet, pill, drink, etc., because it helped them with something completely different.
- When the doctor’s office and I had different opinions on what constitutes ASAP.
- When someone says that I don’t really “need” to be on the low-FODMAP diet or medicines that are currently keeping me from starving to death. (“It’s just a piece of bread! It won’t kill you!” or “It’s just a couple hours…surely you can make it a bit longer!”)
- When someone “knows more” about my diagnosis than my doctor or me.
- When someone says, “I can totally relate. I had a terrible stomach bug a few weeks ago, and it lasted FOUR days!”
- When people act like I am just being picky about my food.
- When I have to explain every detail of my recent medical history when I go to any doctor’s office (even the dentist!), just to be bombarded with questions because the staff is so intrigued.
- When I get frustrated because I’m not as strong as I was a year ago. (As a general rule, it takes three days of recovery time for one day of bed-rest; I was completely out for right at nine weeks, so that means I’m facing six-plus months of recovery time before feeling “normal” again. Let that sink.)
The list could go on for days, but my point is that it would be really, really easy to lose patience in situations like these. It’s really difficult for people to wrap their heads around a rare diagnosis. But losing patience with them, or with myself, is just not an ok-thing to do.
A few days before I went back to work in April after being on leave for nine weeks, I sat down with my parents and Erin and had a conversation that will always stick with me.
To give you a little background, both of my parents have also faced rare diagnoses in their lifetimes (we have a knack for it, I guess). My mother found out in her thirties that she has narrow angle glaucoma, and then she nearly went blind about eleven years ago when her optic nerve collapsed. I don’t remember exactly how many surgeries and procedures she went through to keep her sight, but it was extensive. My father, on the other hand, is the only known survivor in medical history for an extremely rare childhood cancer diagnosis (amelanotic melanoma with an unknown primary source in a minor). He wasn’t supposed to live more than a few weeks, and yet here he is, over forty years later.
So when I sat in their living room, preparing to venture into the world of the living again, I recognized that I was talking to an appropriate audience for understanding my situation. Maybe they didn’t know exactly what it felt like to be in my shoes, physically speaking, but they know what it feels like to be a medical anomaly. And one of the things that made the biggest impact on me was how they both prepared me for the changes I faced.
“Find a short, sweet, to-the-point way to describe your situation. Not everyone needs to know your medical history, and it’s ok to tell people if you just don’t want to talk about it.”
“Be ready for a load of questions every time you go to any doctor’s office.”
“It’s completely ok to be upset or hurt or tired. Just make sure you don’t take it out on others when you are.”
“People aren’t going to understand what you’re going through; they have no point of reference. Just remember that most of them mean well and are genuinely trying to help, even when they aren’t.”
A lot of other things were said that day, and it was a truly helpful conversation. As I’ve referred back to it over time, I’ve realized that every single bit of what they said boils down to patience. It truly is a virtue.
Romans 12:12 says, “Let your hope keep you joyful, be patient in your troubles, and pray at all times.”
I honestly can’t think of a more appropriate verse to summarize the experience of having PI-IBS (or any other chronic/rare diagnosis). Life isn’t always easy, just like joy and patience aren’t. But keeping yourself joyful, prayerful, and patient is key in adjusting to your new life. I promise, it gets easier with time…especially if you spend your time asking for God’s help. Getting annoyed with someone who wants to offer advice or a “cure”? Pray about the situation; it’s hard to yell at someone when you are praying for them (and you!) in your head. Getting frustrated from feeling weak? Have some patience with yourself; it takes time to recover and adjust. Feeling down from repeatedly telling your medical history each day? Think about how sick you once were and how far you’ve come since then; it’s pretty much impossible not to feel some joy in the fact that you made it.
Living with this diagnosis isn’t a walk in the park, but a patient mindset can make a world of difference.
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