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?

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

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

School & Sunglasses: Chronically Misunderstood

This one is inspired by Chronically Dannie. She wrote about her high school violating her privacy, and it brought back this memory I had stored away.

The way high school is set up in my town is we have a freshman center and then a high school for 10-12 grade. Our school is huge and everyone couldn’t fit in the main high school, so freshman had their own building. The administration at the freshman center were super uptight, and were know-it-alls, hence this situation.

If you aren’t familiar with what a 504 plan is read this. I had a meeting about my 504 plan and accommodations, it went fine, they couldn’t come up with very many solutions or things to help me, but that wasn’t a new situation at this point. The next week my mom emailed them to follow up on some plans, and the 504 coordinator responded by telling her she had a new idea. She said I was going to be required to wear sunglasses while at school. WTF? I never wear sunglasses inside and when we told her I wasn’t gonna do that she said, “well my kids who have concussions do it and it helps them, so you should do it.”  She was taken back by the idea that I wouldn’t do that.

Wow I had no idea she had such an extensive background in medicine. Thanks Dr. Web-MD! I’ve never had a concussion and sunglasses aren’t gonna help my migraines, plus do I really need to stick out more? I was already “that girl who’s gone all the time,” I didn’t need to add “sunglasses girl” to the mix. I appreciate her trying to do something, but this wasn’t helpful, and the way she came across also didn’t make the situation better. Also, in what world can you make someone wear sunglasses inside? Definitely not the one I live in!

This just in, sunglasses cure migraines. I guess being in pain was completely avoidable all this time. This also wasn’t the last time that someone told me wearing sunglasses would “cure” my migraines. It’s funny now, but I still think it’s really odd. Have you had any weird experiences or “cures” offered to you due to chronic illness?

Lots of Love,

(and absolutely no sunglasses)

Alyssa

 

Yes I’m in the Room: Chronically Misunderstood

For a while now I’ve been trying to come up with some sort of title for a series of stories that have to do with misunderstandings, awkward moments, and chronic illness. This is the best title my brain can come up with for now: Chronically Misunderstood

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Yes I’m in the Room:

First off you’re gonna need to know a bit of the back-story. In the seventh grade (2012) I had my gallbladder and appendix removed. The healing process was long and my pain only got worse from there. I had some complications and vomited bile, all day, everyday or over a week. It was the beginning of missing a lot of school and church, because I felt awful.

This incident happened at a church I used to attend but left a little over a year ago. We spent a total of around six years there and I’ve mentioned before that it had a lot of problems. At this point we had been there for around three years and were pretty engaged. It was a huge church, and it became very easy to slip through the cracks.

One day at the end of Sunday school the main teacher makes an announcement. She tells the class that I had been sick, had surgery, and had been in the hospital. She then proceeds to ask the class to donate items for a care package for me. Now this was a nice gesture and the woman who had the idea was very kind, but there was just one problem. I was in the room.

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She obviously didn’t know what I looked like or who I was, because I was there. Mortified and wishing I wasn’t, but I was there. Someone told her afterwords that I was in the room and she came up to me and told me how happy she was that I was doing better. She completely ignored how awkward the situation was.

The room was full of around 5o kids who were in my grade, plus all the other teachers. Everyone who knew me or at least knew who I was turned and looked at me as she spoke about “how sad” my situation was. My friends couldn’t stop laughing and I was just siting there unsure of how to respond. AHHHHH!

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Now I think it’s hilarious, and I hope you found it funny too. The funniest part to me is that they never “took up items” for me. All that and nothing came from it. I definitely didn’t want anything and didn’t expect anything, but I found it kinda odd to make such a scene and then do nothing. Oh well, all you can do is laugh!

Lots of Love,

Alyssa

 

 

 

No, I’m Not Pregnant

The irony of being queer and chronically ill is that I’ve been asked by doctors if I could possibly be pregnant… a lot.

Now this is part of their job, and I know they have to do it, but the medical field often seems very unaware of any sexuality other than straight. I don’t believe you should make any assumptions about other people – especially when it comes to gender and sexuality. I’ve been asked straight up, “how do you know you’re not pregnant?” Almost like they’re testing me.

Most of the time doctors or nurses ask if you could possibly be pregnant, because they are going to administer a test or medication that could be harmful to a fetus. It makes sense why they ask and make you take a pregnancy test, but it gets a little redundant. I did infusions every day for a week at an infusion center, and every morning I had to pee in a cup for a pregnancy test. If you saw me yesterday afternoon and saw how sick I was, how in the world could you possibly believe I got pregnant in the short time I was gone?

If I can barely walk down the stairs some days, how in the world do you think I’m having sex? Also I rarely leave my house, so where am I supposed to find someone who wants to have sex with me? At this point it’s pretty comical, but still annoying. I don’t mind peeing in the cup, but paying at times $150 for a pregnancy test that it is literally impossible for to be positive is ridiculous.

One visit to the ER, I had already been there for hours and received medication, and now it was time for me to be discharged. They wouldn’t let me leave until I had a pregnancy test, although if I was pregnant any damage done to the fetus was irreversible at this point. This situation was particularly frustrating because I went to the ER for excruciating period cramps. They were taking a long time to do the test, and when the doctor came in I said,” I think it’s pretty obvious I’m not pregnant. I’m on my period.” And yes I know there are abnormalities where sometimes you are pregnant, but will still get one last period, or something could be wrong and you could be bleeding, but that obviously wasn’t the case. Apparently this made the doctor mad (even though I said it in a joking manner and wasn’t trying to be rude, but whatever) and she said, “you could be having a miscarriage,” and gave me the evil eye. I had an ultra sound of my ovaries and uterus while I was there, so I think it would have been clear if I was pregnant.

For someone who’s never been pregnant I’ve taken a lot of pregnancy tests. But hey, just mark it down as a funny story, I guess.

Lots of Love,

(and an empty womb)

Alyssa