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 Language of Disability

Not that long ago I didn’t consider myself disabled. Society had taught me disabled people were in wheelchairs, had some level of impaired mobility, or had moderate to severe cognitive disabilities. Sure chronic illness had completely taken over my life, but in my eyes I wasn’t disabled enough.

Fast forward to maybe nine months ago, I realized I was in fact disabled by my chronic illnesses and took on the label with pride. For me disabled is both a description of how chronic illness affects my life and a political label. I don’t have a problem with being referred to as disabled, because it’s true.

A lot of people however don’t seem to like the word “disabled.” When I was in high school I applied to become a “Best Buddy” which is a program where you befriend someone in the special education program. Fortunately or unfortunately for me (depending on how you look at it) they didn’t have enough special ed kids for all of the volunteers to have a buddy, so I never got one.

I did go to a training class after school one day, and something from it has stuck with me. They talked about how you shouldn’t ever say someone is disabled, instead say “a person with a disability, differently abled, or handi-capable.” The funny thing about the language of disability is I only see parents/caretakers asking people not to say disabled, never actual disabled people. I’m sure there are disabled people out there who don’t like the term, but I personally haven’t run across any. Many people take on the label with pride and try to advocate for themselves and others with disabilities.

I personally have a problem with the term “differently abled.” Disabled people aren’t differently abled, they are disabled. There are things we can’t do, point blank, end of story. For me some days I can do something and the next day I can’t, but there are also things that I’m never abled to do no matter the circumstances. “A person with a disability” isn’t offensive, I just find it unnecessary. The argument for the other side is that you should put the person before the disability. I feel you don’t have to take that literally. As long as someone is being respectful and isn’t  using a demonizing or belittling tone, then there isn’t anything wrong with saying “disabled people” or a “disabled person.”

Of course you should treat someone like a human being, and not reduce them to their diagnosis. However I don’t fid it necessary to say “person with a disability” every time you speak about disabilities. What are your thoughts? Do you use the term disabled to describe yourself?

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

Daith Piercing for Migraines?

Whether you have migraines or not you may have seen posts that circulate the internet about daith piercings being cures for migraines. The daith is the inner most piece of cartilage on your ear and it’s supposed to act as an acupressure point.

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As a skeptical person I’m not really buying this as a migraine cure. I get the idea, but I don’t really think it will work. With that being said, my mom has had three co-workers get this done and all of them have had less migraines. I could try to come up for explanations for why they got better after getting the piercing, but I’m not going to. It really worked for them and so I’m going to try it… with no expectations of course.

The worst thing that could happen is that it doesn’t work. This isn’t invasive and I really like the look of them so I would probably keep the piercing either way. The place her co-workers went specializes in this piercing for migraines and is reasonably priced, so I’m going to go there as well. I’m not a huge fan of a lot piercings but I think one or two on the ear (that aren’t the typical lobe) can look cool. Some people look really good with other piercings like their nose or septum, I just don’t think I would be one of this people.  I’ve wanted my helix pierced for around two years now but I’ve been vetoed by my parents.

This place doesn’t do appointments, only walk-ins but I’m planning on going on Saturday. You have to get one side done, wait a month for it to heal some, and then get the other side done if it doesn’t completely relieve your migraines or you get them on both sides. I plan to make an update post once I get it and then again after I’ve had them both for a few months.

Have you ever tried any “internet cures” for your chronic illness? Did they work?

Lots of Love,

Alyssa

 

17 Going on 67

I haven’t been feeling great for the past two weeks or so.

I don’t think I’m in full flare mode yet, but my body just feels bad. I’m not having migraines, but I am having daily headaches and gastro issues. My tachycardia has been affecting me more than usual and making me really tired. I just feel old.

My joints hurt, and everything is exhausting. Weird things keep happening that aren’t a big deal, I just don’t normally experience them. My muscles have been twitching, my joint crack ridiculously loud every time I move, and a few times in the past week I’ve started shaking randomly. These things probably won’t last long, because my body is an asshole who likes to mess with me, but they’re annoying none the less. It’s been hard to explain, but something feels off. I’m not in a ton of pain, but I feel terrible and that’s not really something you can fix.

I went to my first appointment at a new counselor since the last one kept canceling on us. It was an “intake” appointment and she just asked me a bunch of questions. I feel like all I’m doing is complaining, but to be honest I didn’t really like her. She asked me a few questions in the beginning and my brain went blank. I couldn’t think, my heart starting racing even faster than normal, my whole body flushed, and I felt lightheaded. I was embarrassed and said, “I’m sorry my brains a little foggy today,” and she just gave me a look like I was crazy and said “oooooh kayyyy.” It felt really judgmental even if she didn’t mean it that way. She also said somethings that rubbed me the wrong way and tried to give me medical advice, which is so very annoying. I’m still going to try to have one real appointment with her and give her a chance, because there isn’t anyone in my area who wants to see a seventeen year old with chronic health issues.

I’m really hoping they’ll find something in my electrophysiology study next week, because this fatigue is awful. I’m normally pretty fatigued, but this a whole other ball game. I am grateful that I’ve only had a few episodes of extreme pain, but I’m fearful for the weeks to come. This time of year is normally really bad for me, so it’s been kind of weird that I’ve had less pain than normal. I’m trying my best to stay positive, although this post wasn’t very positive was it? Sometimes we all just need to rant.  I have a hard time finding a balance between my realist personality, inner cynic, and the positive person I know I should be trying to be.

How are you doing? Let me know what’s knew in your life or what’s been going on!

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