chronicallyunusual-blog - Tumblr blog

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Doctor: *knows I have Colitis

Doctor: *palpates my abdomen for a solid five minutes

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Do you ever just break down in tears at the thought of having to take a shower?

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Huge shout out to my GI nurse who got me scheduled for an appointment in just three days time, after I called in distress after spending all morning sobbing on the bathroom floor with excruciating abdominal pain

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How to lose 10 lbs in just 10 days!

Come off of your course of steroids

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PSA: my hearing is already crap, so if you take me somewhere with a lot of people (aka a concert), you better not start talking quietly about some personal matter, or else I’m gonna sit there saying “WHAT” until you speak up, because I legit have no clue what you just said.

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Lab tech: “you’re probably one of the healthiest people we’ve ever seen in here!”

Me: *makes it 7 minutes on a treadmill stress test at 3 miles per hour

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Pro IBD tip: if you’re eating something that burns your mouth, it’s gonna burn your intestines even more in the very near future.

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When someone says: “This too, will pass.” 🤦🏼‍♀️

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‪New primary care: “Luckily since you’re just a kid you don’t have an extensive medical history, so this won’t take long.” ‬

‪My mom and I: *make eye contact from across the room and burst out laughing‬

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Ugh I can’t do this “can you be here in two hours?” thing

When an appointment with a new doctor is coming up, a lot of mental preparation has to first occur. What to say to the doctor, which symptoms are deemed the most important, evaluating what your quality of life currently looks like, figuring out what you hope to get out of the appointment (new treatments, referrals, etc.). There is a lot that goes into it, so I’d be completely lying if I told you finding out I have a new patient appointment in two hours didn’t send my entire body into a state of jittery anxiety...

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PLEASE don’t tell me “get well soon”

Having chronic illness is hard, and I understand that learning how to interact and cope with a friend or family member with chronic illness can be extremely challenging. So, to hopefully prevent others from having this awfully awkward interaction, here’s a tip to keep in mind: never tell someone with chronic illness “get well soon!” Although you may think this is a sweet and thoughtful comment, it’s actually really offensive. It’s like saying to someone who is paralyzed and in a wheelchair, “get well soon!” Now how weird and offensive would that be? It would only remind that person that they will never get better and that they will be paralyzed for the rest of their life.

Now, personally, I don’t mind when people say, “I hope you feel better soon!” I personally do experience both good and bad days, so I receive this comment as, “I hope you have some good days ahead of you!” This is not the case for everyone however, some people with chronic illness receive this comment as more of, “I hope you feel perfect and agile and like you did before you were sick, soon!” And this only reminds them that they will never return to the quality of life that they used to possess.

So, you may wonder, “Well what am I supposed to say now?!” I would highly recommend a: “Remember, I’m always here if you need to talk.”

Having a friend there that you can just rant to is the absolute best. You don’t have to understand. As someone with chronic illness, I never EXPECT my friends to understand, however, I appreciate it SO incredibly much when someone simply asks me a question or tells me that they looked up one of my conditions. Be there for your friends. I know it’s hard, I know it’s exhausting, but you will help this person so much by just being there, and I promise, you’ll become a better person because of it.

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‪PSA: If you wake me, you also wake my joints and my digestive tract (therefore I will be in too much pain to go back to sleep).

So, if you wake me before my alarm goes off, I’m gonna be real ticked if the house isn’t on fire.

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“If you don’t have your health, you don’t have anything.”

What’s up with this? From a young age, I heard this saying all around me - my parents, grandparents, family friends, all saying these few words.

I believe that the intent behind this phrase is holesome. It’s meant to encourage people to take care of themselves. And that’s all fine and dandy, but I think we lost that meaning somewhere along the line. Now, when someone tells you this, instead of it meaning, “Take care of yourself!” it means, “In sickness you are worthless.”

What aggrivates me most about this is that the majority of illnesses ARE NOT CAUSED BY SOMETHING YOU DID. Cancer, autoimmune disease, chronic pain, anxiety, these are all things that happened to you. You do not inflict them upon yourself. I didn’t just wake up one morning saying, “Man, I wish I had a chronic pain condition,” and then later that day developed one. THAT’S NOT HOW IT WORKS. You may say, “well what about things like type 2 diabetes? That’s totally that person’s fault. They didn’t watch what they ate and now they have this awful disease.” Did you know that new research is allowing us to see that some people are GENETICALLY PREDISPOSED to certain illnesses? As long as I’m not mistaken, you don’t get to choose your genes. If so, I’d like to order some new ones immediately. Just kidding.

So what does this mean for us when we’re raised in a culture telling us that our worth is determined by our health, and an alarmingly high number of people are being diagnosed with chronic health conditions that they did not inflict upon themselves?

So now, instead of encouraging people to take care of themselves, we are pretty much saying, “Something awful happened to you, and now you’re worthless.” Talk about rubbing salt in a wound.

This is where I get confused. What makes my life any less valuable than yours? What makes me incapable of having as much of not more joy than you? What exactly makes my life so insignificant in your eyes? Because from my experience, sick people are the kindest people I know. Sick people are the ones who don’t waste a moment, the ones who laugh every single day, the ones who embrace adversity, the ones who keep a calm head, the ones who are the most ambitious, the ones who are genuinely happy, the ones who want to do something with their lives, the ones who want to impact the world. Sick people are world changers. We are not worthless, we are strong.

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Me: OH MY GOSH WHY DOES MY STOMACH HURT SO FREAKING BAD TODAY

Me: *Realizes I forgot to take my meds

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Life hack:

Always sit at the desk nearest the wall so that you can discreetly use your heating pad when needed.

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When a side effect of every IBD med on the planet is diarrhea...

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Why does everyone act like I’m broken? Why do I get looks of pity 24/7? Why do people act like I’m putting on a front whenever I’m talking about something not pertaining to my illness? This may be news to them, but my illness is not my life. Sure, my illness is part of my life. Yes, it plays a roll in my life. Sure, it even plays a roll in my daily life. But so does school... and eating... and homework, emailing professors, brushing my teeth, hanging out with friends, dealing with friend drama, going to extracurricular activities, watching movies, and grocery shopping. These are all PARTS of my life.

When I’m happy, I’m genuinely happy. I’m not putting on a front to cover up my “sad and miserable life”. When I am sad, I’m not looking for sympathy (and my sadness may not even be related to my illness whatsoever *gasp). When I talk about my goals for the future, they’re not to “be an inspiration” or “prove that anything is possible,” they’re just my personal goals. Every person has goals. I could go on and on, but I guess my point is I just feel like people with chronic illness are often labeled as a different species when in reality, most aspects of my life are the same as a typical person. Yes, my illness still affects me for most of not all of the day, but so does the looming stress of your upcoming history exam. Just saying, I don’t look at you with pity and act like your school-related stress defines your entire life.