Shit My Ableist Family Members Say: Chronically Misunderstood

After spending Thanksgiving with my extended family, I realized about 95% of my conversations with them included a lot of ableism and me gritting my teeth. There’s some of things they’ve said to me recently:

  1. “I’m so glad you’re better!!!”

My Grandmother told me how happy she was that I was all better at Thanksgiving, when I literally had an endoscopy the day before. About 80% of the time I was at her house I felt like I was being stabbed in the stomach, but my face told another story. Just because I’m good at pretending to be “fine” for your sake, doesn’t mean I’m not screaming in pain.

2. “You’ve learned some great life lessons though”

Yes, I became sick as a child so I could learn a few lessons. One of them is how absolutely insensitive that comment is. Another, is how to restrain myself form decking you in the face.

3. “Do you have a real life now?” or “Are you truly living now?”

Apparently my life wasn’t worth living when I laid in bed sick for months, but dragging my aching body around to school is a meaningful and “real” life.

4. “Sometimes God just answers prayers slowly”

While I am a Christian and believe in God, the idea that one day God is going to magically cure me is ridiculous. Some problems don’t have resolutions, and that expectation leads to devastation.

5. “People who apply for disability are just lazy”

If I wasn’t a minor I definitely would have been on disability, and there’s nothing wrong with that. Also, wow just wow.

6. “I just don’t know how it’s possible that you’re STILL sick!”

Touche

…but it’s called “chronic” illness for a reason.

 

These are just a few of my favorite gems! There’s many, many more and a part two may have to happen soon.

What is the most ridiculous thing people say to you about your chronic illness(es) / disabilities? I’m sure you all have some great stories!

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But it looks cute! : Chronically Misunderstood

It’s been a while since I’ve done a “chronically misunderstood” post, but don’t fret strangers are rising up to the occasion and helping me continue this series!

The majority of the posts in this series are about events that happened a while back. This one however took place just a few weeks ago. If you saw my post about trying Corlanor, then you know this medication gave me fairly severe side effects. On the Monday after I started Corlanor I was a hot mess. I dragged my body to school since I had tests that week and needed to make it to class, but I looked awful. I had no make-up on, I was wearing an over sized jacket, and my hair was in a ponytail. Most days I slap on some make-up, straighten my hair, and trick everyone into thinking I’m fine, but I just couldn’t do it that day.

I got to my second class of the day, which is Algebra, and I needed to turn in my lab since I had missed Friday’s class to go to the Electrophysiologist. I walked up to my teacher’s desk and instantly everything went black and my whole body felt like jello. I grabbed onto her desk rather abruptly and slurred out enough words to explain what I was giving her. She looked at me like I was crazy, and I’m pretty sure she thinks I’m weird, but oh well. I made it back to my desk, and sat down, when the person who sits next to me asked an all too familiar question. “Is your face always this red?” I’ve gotten this question a lot over the years. Most people think I’m sunburnt or embarrassed, but it’s just my face and screwy autonomic nervous system. My face looked red because

1. I had no makeup on

2. I don’t regulate my own body temperature well and my face was super hot

3. I was trying not to pass out

I told him that no, I don’t always look like this, and I wasn’t wearing make-up or feeling well. I guess the look of exhaustion on my face made him think I was upset, so he started back-tracking and apologizing profusely. Honestly, I’m not offended by anyone asking, but I do think it’s rude. In the moment, I just really didn’t feel well and was too disoriented to have a whole conversation on why my face looked uglier than usual. The girl who sits next to him then said, “but it looks so cute! I wish my face looked like that!” Okay, cut the bullshit. I’m way more offended by you trying to act like I look “cute” than by some dumb guy essentially asking me why I look ugly today. It doesn’t look cute, it looks bad. There’s no need to act like it doesn’t. I’m not upset by it, it’s simply just something that happens and is a part of my chronic illnesses.

The girl then continued to tell me a story about when she had a reaction to a face wash in middle school. She ended with, “and yeah my face looked like yours.” There isn’t an eye roll big enough. During all of this I was still super disoriented and couldn’t form together enough words to respond. Oh the joys of chronic illness! I find it hilarious when people try to “relate” to my situation by telling me obscure things that have happened to them.

At least I look cute though, right?

The Hair Perv: Chronically Misunderstood

In the fall of 2016 my PCP thought I might have pseudotumor cerebri. One of my mom’s coworkers daughters had this and went to see a neuro-ophthalmologist, so we decided I should see him and figure out if I actually had pseudotumor cerebri or not.

This was probably the weirdest doctors appointment I have ever had. To start it off we were shuffled between five different rooms to do a bunch of eye tests. No one explained anything or said why I was doing the tests. When we finally saw the doctor he looked at my eyes and said maybe five sentences to me. He told me I needed an MRI and he would give me a prescription for torodol. After four years (at the time) of chronic illness I was kind of offended that he thought  had never tried torodol. It’s pretty much the first pain med doctors try when you first become sick.

After I saw him there was one more eye test I had to do. An older man was running the machine and was getting everything set up. To be honest I don’t remember 100% what the test was for since the day was such a whirl-wind. The man had to put some sort of salt on my scalp and then put electrodes over the areas of salt. I had rather long hair at the time, and my hair is pretty thick. As he put the electrodes on my scalp he ran his finger through my hair and said, “I’m enjoying this way too much.”

“I’m enjoying this way too much”

What the hell is that supposed to mean? I was sixteen and that comment was incredibly inappropriate, plus my mom was standing right there. I have no idea why he thought that was an okay thing to think, let alone say. I was there to find answers to my chronic illnesses, not be hit on by some pervy old dude.

We did the MRI and found out I do not have a pseudotumor, so needless to say we’ve never been back. In those 4 four years pervious to that appointment no one would order an MRI for me, so at least I got that out of this mess.

Oh the things we go through to find answers to our chronic illnesses!

Dead: Chronically Misunderstood

I can remember this moment as if it were yesterday.

I walked into fifth period with a haze over me from the pain meds I had taken that morning. I felt horrible but I had missed this class everyday for weeks and knew I needed to go in order to attempt to catch up. There were three people I recognized in that English class and the rest were complete strangers.

When I walked in there was a boy siting in my seat, naturally I though they had changed seats so I asked a girl who sat by my presumably “old seat” if the teacher had changed the seating chart. “Ugh no,”  she scoffed at me, “we’ve been in the same seats from the beginning of the year.” I didn’t have the energy nor the will to scoff back or come up with a witty comment. “I used to sit there, where’s your old seat? I’ll move,” I ask the boy.

Before he can respond the girl juts in, “Oh your that girl” she says as she rolls her eyes. The boy got up and I sat down exhausted and slightly annoyed at her unnecessary attitude. As I unpacked my things the other students began to talk about me as if I wasn’t there. “I thought she moved” one kid said, “I didn’t think she was ever coming back another chimed in. Then as if the whole world went into slow motion the same rude girl spits out, “well I thought she died.”

I thought she died.

The conversation continues with the other students saying “Oh no I didn’t think she died, but I’m surprised she’s back.” I sat in disbelief. These people who don’t even know my name are having a whole conversation about me while I sit right in front of them. I’m just “that girl” to them.

Looking back I wish I was coherent enough to have snapped back, “thanks for coming to my funeral. You seem really upset by my death.” Honestly the lack of social awareness is what makes this semi-funny. I have to admit a part of me is still a little annoyed that they behaved that way and couldn’t care less about the status of my life. Teenagers can be so insensitive. Of course they didn’t know this but at the time I wasn’t sure if I was going to die or not, soon I mean; we’re all going to die. I had no diagnosis (but that hasn’t changed) and I was in such severe pain everyday that something was obviously really wrong.

Now it’s almost comical, but in the moment it was just one more thing to deal with. Moral of the story think before you speak, oh and also just don’t be a jerk.

Lots of Love,

If a dead girl can even love 🙂

Alyssa

Why are you here?: Chronically Misunderstood

This one is going to be a bit of a back story, but I’ll make it quick. At the time I in high school and it was my freshman year. The school I went to really didn’t like that I was absent a lot and made me jump through a lot of hoops in order to “make up my time.” This had happened for the past two years I was in middle school as well, but their obsession with me being in school makes this story funny to me. Also at this time doctors thought I had abdominal migraines also known as cyclical vomiting syndrome.

I walked into school late and went to check in  before heading to class. Normally I would go to my house office, but the secretary at the front desk stopped me and asked me my name. When I told her who I was she looked me up in the computer system which I thought was odd. I had come into school late a lot and no one ever questioned me. Normally I just went to the office, got a note, and was on my way.

The lady started to look really confused and said, “you aren’t supposed to be here.” I didn’t know what to say to that. Here I am at school, specifically at a school that get’s very angry when I’m absent yet this lady is telling me I’m not supposed to be here? “You’ve been counted absent for the whole day,” she told me. I responded with, “I don’t know why, I didn’t tell anyone I was going to be gone all day.”

She furiously tapped away on the computer and I just stood there throughly confused. She walked away into the main office and came back looking relieved. She exclaims, rather loudly I might add, ” OH YOU’RE STOMACH MIGRAINE GIRL!” I guess I had developed a reputation. “Yeah…” I replied trying not to laugh. For some reason being stomach migraine girl made everything okay and she let me go on my way. I’m still honestly not sure what that situation was all about, but it was funny nonetheless.

Tell me a funny or weird story about your high school experience!

Lots of Love,

Alyssa

Liar Sprite: Chronically Misunderstood

For some reason anesthesia makes me a bit agitated and generally put out with anyone and everything. This specific incident took place after my second colonoscopy/endoscopy and for some reason I decided that filters weren’t needed and I definitely wasn’t gonna use mine.

When I first came to consciousness there was part of a popsicle in my mouth and I was very confused. Apparently I had said I wanted it, but I don’t remember any of that. My dad was holding the stick and the first thing I said was “What are you doing? Why would you do that?” in an accusatory tone. It’s a good thing I have nice parents who just smiled and then jokingly made fun of me later. They’ve put up with a lot from post-procedure Alyssa, and she isn’t always very nice.

Later the nurse asked me if I wanted any Sprite to take some medication with and in a fog I said yes. She came back with Shasta Twist which was completely unacceptable to drugged up me. I turned to my parents and said, “oh so all they have is lair Sprite? I don’t want this liar Sprite.” Apparently anesthesia also makes me high maintenance. I was deeply offended that someone would try to pass off brand soda onto me like it was the real deal.

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The clean out for a colonoscopy is enough to make anyone on edge, but add medication and an already sarcastic attitude and well the outcome isn’t always very pretty. I think it’s really funny that I said those things because I never act like that, and I can’t believe that off-brand soda offended me. Who knew I was such a brat when it came to Sprite?

Lots of Love,

and Sprite 😉

Alyssa

 

 

 

Poop Shoot: Chronically Misunderstood

Way back in the very  beginning of my medical journey I had my first ever CT scan. The pediatrician I saw thought I was having an appendicitis so I had a scan scheduled for that afternoon at the hospital in my town. Up until this point the only person in my family who had been there was my brother for a collar bone fracture, and the care wasn’t very good, so our hopes weren’t high, but we didn’t have any other choices that we knew of.

When I arrived for my appointment they have me two one-liter bottles of contrast to drink. It was thick like a smoothie while also being chalky. One was berry which I was fine with and the other was banana. I absolutely hate banana. It isn’t just a food I don’t care for, it’s my least favorite food and the smell alone makes me want to vomit. They didn’t have any more berry though, so I was going to have to suck it up. I had two hours to drink it all and I already wasn’t feeling well.

Needless to say the next two hours were awful.  I couldn’t finish the last half of the second bottle and when we went back so they could perform the CT and told the tech I couldn’t finish she said, “Oh that’s fine, one was probably enough.” Are you kidding? I dry heaved the whole time while forcing myself to drink this nasty paste and I didn’t even have to drink the second one? Ugh

Then comes the IV. This was the first time I had ever gotten one and I was terrified. They made my mom stay in the waiting room which didn’t make much sense because they hadn’t started using radiation yet. The same annoying tech stuck me three times and surprise, surprise didn’t get it.  She called in an ER nurse who got it… three times later. The whole time they searched for a vein she kept saying to me “all we’re gonna do is a take some pictures to look at your poop shoot.” I swear she said “poop shoot” like twelve times. Maybe she thought I was constipated, but there’s no way she could have known that from looking at me.  I may have been 12, but I was more than old enough to know and understand anatomical names for body parts.

Both during and after the scan she also mentioned my “poop shoot” again. Something about that phrase just weirds me out. People say some odd things to kids into to try to relate to them. If your curious I wasn’t constipated, at the time I had Mesenteric Adenitis which was super confusing and I’m still not sure how it all fits into this puzzle. I can’t help but laugh every time I think about a grown woman squawking “poop shoot” over an dover again. Who thinks of these things? 🙂

Lots of Love,

Alyssa