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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How did you know you were gay?

Even though I’ve been out for a few years now, I’ve never really had anyone ask me “How did you know you were gay?” until a few weeks ago. One of my lab partners (who’s also gay) asked me this kind of out of the blue while we were working on our lab report after class. Honestly, I didn’t have a great answer prepared.

I told her about an experience I had sophomore year of high school, where I randomly had a huge crush on this girl I didn’t really know in my Chemistry class. I wrote about that crush a long time ago, but I’ve since come to some other realizations. I think she could have been replaced with a thousand different people and it wouldn’t have made a difference. It’s not that I don’t have standards, or that I’m attracted to every girl I come in contact with – that’s far from the truth. It was just a period of time where I was questioning and figuring everything out, and she just so happened to be in the same class as me.

Now, my lab partner wasn’t exactly satisfied with this story. “But how do you know it wasn’t just her?” That question threw me for a loop a little bit. There’s no good answer, I just do. It’s a feeling that, I don’t feel the need to question anymore. For me, sexuality isn’t a complicated part of my life. I know how I feel, and who I like. It’s just that simple. It wasn’t that easy in the beginning, but over time the doubts left and I feel perfectly content with the conclusion. I don’t have some great story about being swept off my feet by the love of my life, and I don’t think having that kind of story is necessary. I wanted the experience to be casual and simple, and it was.

Her questions came from a place of curiosity, but they definitely made me think about a few things. Why are people so obsessed with knowing every thought that goes through queer people’s minds when questioning their sexuality or gender? Also, why do they feel the need to question it’s authenticity? One of my favorite qutoes from Denice Frohman’s poem “Dear Straight People” is:

” Dear Straight People, I’m tired of proving my love is authentic, so I’m calling the reparations on your ass. When did you realize you were straight? Who taught you?Did it happen because your parents are divorced? Did it happen because your parents are not divorced? Did it happen because you sniffed too much glue in fifth grade? Dear Straight People, why do I have to prove my love is authentic? Why do I have to prove my love is authentic? Why do I have to prove my love is authentic?”

I get a whole lot of “I would have never known” and “Really???” This has to do with the fact that I don’t look queer enough in straight people’s eyes. I wear makeup, have shoulder length hair, and generally act feminine enough to be shoved (forcefully) into the straight box. I can look in the mirror and think, “wow I look really gay today” (in a proud way) and still no one suspects a damn thing. The authenticity of my gayness is questioned because I don’t look the part or fit perfectly into the tiny box created for the stereotypical lesbian.

I don’t mind answering these questions, or most questions for that matter. However, I am tired of both people in my day to day life as well as society as a whole questioning who I am because I don’t fit the mold. So, how did I know I was gay? I trusted myself, and through lots of introspection discovered the answer to this aspect of my life. Maybe it’s not the best answer, or the answer people want to hear, but it’s the most honest one.

November Health Update

Quite a bit has changed since my last health update!

I’ve now seen my electrophysiologist two more times, even though he originally wanted to refer me on. I went on flecainide acetate for a few weeks, but it made me incredibly hypotensive and I couldn’t properly function on it, so we decided to discontinue it. I’m currently on Digoxin, and my symptoms have improved. A major part of the improvement is due to coming off the flecainide acetate, but I do think the Digoxin may be helping some. I saw him on Monday, and we are going to continue to digoxin and possibly increase it, depending on the results of my endoscopy.

At my last appointment, he brought up the possibility of having another electrophysiology study, but this time actually ablating my sinus node. I didn’t have an ablation last time, because I don’t have SVT so technically nothing is structurally wrong with my heart. The complete ablation of the sinus node for people like me who have IST, a form of dysautonomia, results in a pacemaker over 50% of the time. To me, this would be a last case resort. I’m technically on the last medication that is prescribed for IST, so if it doesn’t continue to work I’m kinda screwed. However, I’ve read all of the research papers I can get my hands on and this procedure is often contra-indicated for people with dysautonomia. As of right now I don’t really view it as an option, but if things get worse it may have to be a possibility.

On Wednesday, I had an endoscopy mainly to test for systemic mastocytosis. I had no visible abnormalities, which we expected. This was my third endoscopy, so we were basically only doing it for the biopsies, which they did a ton of. The procedure went really smoothly and quickly. I had felt absolutely terrible on Tuesday, but even with the anesthesia I felt okay Wednesday. Thursday and Friday however were a whole other story. I felt like I was being stabbed in the stomach for most of Thanksgiving, and Friday I had a migraine most of the day. I tried by best to celebrate and push through, even though I felt quite terrible.  I’m moderately nervous for the results, since having systemic mastocytosis is kind of a big deal, but on the other hand having yet another false test is going to be frustrating. You really can’t win for losing with chronic illness.

I keep having really bad days/weeks and then really good days/weeks, so it’s been hard to judge the pattern of my health. I’m incredibly grateful for the good days, especially when they’re proceeded with a terrible day. I think I’m doing a pretty good job of handling it all, but I am pushing myself pretty hard. Having a few days off of school for Thanksgiving has been nice, and before we know it, it will be Christmas break. I still feel like I’m slowly declining, but I also feel hopeful due to the new doctors I’ve added to my arsenal.

How’s your health been?

I hope you’ve all been having a good November!

 

Thanksgiving 2017

Happy Thanksgiving ya’ll!

This year I have a lot to be thankful for. I’m doing well in school, I have better doctors, and a great family. Thanksgiving last year I was feeling terrible, and had just dropped out of high school, now I’m going to college full time. My health issues are still present- I even had an endoscopy yesterday, but I feel like I’m beginning to get the help I need. Mental health wise I feel so much better. Last holiday season I was just going through the motions, and wasn’t truly enjoying any of it. I feel so incredibly lucky to be able to enjoy life and want to celebrate this year. I’m also thankful for the blogging community, especially since Queerly Texan is about to turn one year old!

I hope everyone has a great Thanksgiving! Holidays can be incredibly hard when your struggling with chronic illness, mental health problems, or an unaccepting family. Be kind to yourself today. It’s okay to excuse yourself if you need a moment to recharge. Try not to stress out too much – the holidays are supposed to be a joyous time!

I hope ya’ll are all having a great Thanksgiving or just a great Thursday if you aren’t celebrating!

With love,

Alyssa

Revisiting My 2017 Goals

In December of 2016, I made a post about my new year’s resolutions and goals for 2017. So, did I meet my goals?

Goal #1- Getting a Driver’s License

In June, I was able to receive my diver’s license which has given me so much independence. I had a lot of anxiety surrounding the situation, but it went really well and I enjoy driving. I drive myself to school everyday, to some of my doctor’s appointments, and I’m able to run errands whenever I need to. When I couldn’t drive, I always had to do everything on my parent’s time table, which is difficult to do when you’re chronically ill. Now I can run errands or go somewhere when I’m feeling well or when I want to, which is very nice.

Goal #2- Obtain a GED

This goal was crucial for me to continue my education. I got my GED mid-may, which made it possible for me to attend college this fall. It was an incredibly hard decision to make, but I’m so glad that I chose to get a GED! I’ve enjoyed being able to go back to school and continue my education.

Goal #3- Be more positive

Being positive is something that isn’t always easy for me, especially when I’m feeling particularly depressed. I do think I’ve been more positive this year at times, but I also think this is something I’m going to have to constantly work on. When your life is chaotic and lots of negative things have happened, positivity can seem scary and vulnerable. I’m working on viewing positivity as a strength instead of a weakness (as weird as that sounds!).

Goal #4- Say “Yes” More

This year I’ve definitely stepped out of my comfort zone when it came to continuing my education. I’ve tried to say yes more when people asked me to hang out, or come to a gathering. Saying “yes” isn’t always easy for me and it’s definitely something I need to continue to work on. Being uncomfortable can be a good thing, and I’m trying to learn to embrace it!

Goal #5- Read the Bible More

I keep a journal of when I read the Bible, and comparing my notes from 2016 to 2017, I have spent more time in the word. I go through phases with my faith, where I’m really dedicated to prayer and reading scripture, and then I fall off the bandwagon. In 2017, I’ve tried to be more present in church. When I’m sitting in the worship service, I try to listen to what the Pastor is saying and listen to what God’s saying to me. My faith is incredibly important to me, and so I want to continue an upward trend of spending more time with God.

Goal #6- Volunteer

I’m slightly embarrassed to say I did not complete this goal. The first half of the year I was really sick, and wasn’t able to volunteer. Then I began to feel better, but school started and I got really busy. I have applied to volunteer at my local hospital, and so I hope to be able to help others more in 2018. I did  volunteer multiple times this year for my church, but I haven’t continuously volunteered anywhere. I’m looking forward to hearing from the hospital, and helping out wherever I can.

Goal #7- Reach Out

This year I’ve reached out to a couple of people I used to go to school with. While the conversations were nice, I’ve realized that I don’t need nor do I want to continue any sort of relationship with these people. That may sound harsh, but I was never very close with any of them and I feel as if I’m currently in a different stage of life than they are. It’s also not like they’re trying to actively pursue relationships with me either.  There’s no hard feelings, in fact I wish them all of the best. One thing I’ve  learned this year, is that people are in your life for a time and a reason. Most people won’t be in your life forever, but it’s important to recognize the good times you’ve had with them.

 

I can’t believe it’s about to be 2018! The year “2018” sounds futuristic to me, and I swear it was just 2012. I’m really excited about 2018, because I know my life is going to change dramatically over the next twelve months. It’s both terrifying and amazing, and I can’t wait to see where life takes me. I’m going to be posting my new goals for 2018 very soon!

 

Turning 18

Today, November 17th is my 18th birthday!

I have so many mixed emotions about turning 18, but overall I’m excited about it! To me it feels weird that I’m only going to be eighteen, since I’ve felt like an adult for a long time now. My family always jokes that I’m “17 going on 37” since I often act much older than I am. Even as a child I wasn’t really interested in being a child, as weird as that sounds. Immediately not much is going to change. I’m not going to buy cigarettes or have to be financially responsible for myself. The only “new” thing I get to do is sign all of the forms at the doctor’s office lol.

I feel grateful to be eighteen, and grateful to be in the place I am in now. Although this past month and a half have been more rough than the Summer was, I’ve still been able to keep up with school and have a generally functional life.  This time last year I had just gotten out of the hospital and dropped out of high school, now I’m going to college full-time and getting better help with my health. It’s amazing what a year can do. I look forward to seeing how my life changes within this next year!

 

Adapting with Chronic Illness

Sometimes friends and family members will see me and say, “wow you must be feeling better!” What they don’t realize is that some days I’m not doing any better than I was six years ago, I’ve just adapted. In the beginning it was so incredibly tough to even get out of bed. I was a child, and had never truly had to persevere before. At the time, I was trying my absolute hardest to function, but it was all new to me. Now I’ve adapted. I go to school and church with extreme pain and fatigue. I do homework as I run back and forth to the bathroom or grimace in pain. When I’m in a state that I’m able to force myself to function, I seem very “normal.”

This semester I’ve made it to class more than I ever have in the past six years. As of now, I’ve only missed four class periods total, and three of those periods were for doctor’s appointments. Part of this is because I felt decent at the beginning of the year, and so it was fairly easy to make it to class. Now I’m struggling more, but I’m still forcing myself to go to school. Just because I’m able to function, doesn’t mean it isn’t hard. Yes, some days it is easy, and I feel incredibly lucky to have easy days since so many people do not get them. I used to not get easy days, and it was so incredibly hard. However, some days I’m trying not to pass out in the middle of math class, or holding down vomit in history lecture. My body is still very broken.

I’ve also taught myself how to “pass as abled.” I can put on the makeup and clothes, do my hair, and paint a pleasant expression on my face. Most people aren’t very observant and buy it. By now I should have an Oscar for my performance! However, if you look really close you can see the exhaustion in my eyes and hear the slight pain in my voice slipping through. One thing chronic illness has taught me is to be observant. Things are often not as they seem, and if you really pay attention to people, you can pick up on so much. I’ve learned how to appear fine, but other people have not learned how to see through it.

In many ways, I’m so glad I’ve adapted! I’m able to handle everything chronic illness has thrown at me, and I have strength to continue to fight it. I’ve learned how to be more functional, and now I’m able to continue my education. Sure, I don’t do anything else but go to school, do homework, and recover from it all, but I enjoy succeeding in something. It does make me sad sometimes that this has become my normal. Pretending to be fine, when your body doesn’t work right is exhausting, and can be incredibly lonely. At times, I’ve felt angry that I even had to adapt, that I had to accept this life as “okay.” Chronic Illness is a constant cycle of grief and acceptance, and adaptation is a huge part of that.