Invisible disabilities are something that, if you don’t first hand witness how hard they are, it can be very easy to look right by them. When I was 7 years old my mom was diagnosed with Multiple Sclerosis. At the time it didn’t seem something that was very serious. She would get injections monthly and take her medicine and she would live normally. As time progressed she began to struggle with every day life activities and need to rest a lot in order to take care of herself.

Multiple Sclerosis (MS) is something that essentially, in the worst scenario, could be fatal. It is very exhausting on the body and I wish I better understood that. When I was in middle school I vividly remember asking my mom if she could take my friends and I shopping for the day. My mom LOVES to shop. So when she said no because she was having a flare up I thought that was just an excuse. I then remember comments I made such as “just take some medicine” “sleep when we get back” and realized how ignorant I was. I had no idea the severity of the pain she had because looking at her, she looked just fine. My younger siblings would do the same thing. I remember times they would make comments about how mommy was so lazy and never did anything. Looking back now it is heartbreaking because my mom would do anything for anyone in the whole world and it would kill her when my siblings and I wouldn’t get upset with her for something she couldn’t control.

Paralysis is a possible outcome of Multiple Sclerosis. As a family, to better understand what our mom goes through, we decided to do an annual MS walk in Pittsburgh, PA. Through this we were able to meet other families that struggled with what our family went through. It allowed my siblings and I to realize what our mom goes through is real and that a lot of other people struggle as well.

The point here is that invisible disabilities are real and it becomes more of a sensitive when it involves your own family.

At this point of the semester, many people feel burnt out and defeated. I definitely say I have reached that point. So many projects, assignments, and essays to do in such a short period of time. It’s hard enough to get out of bed and do the simple things in life, but add on all of the stress of school it feels crippling. I have barely been able to go to any of my classes because of my mental health and I can barely get the energy to finish assignments. Im craving winter break in hopes of a mental break. I just need time to breathe and relax and right now I do not have that. I wonder if it ever gets easier of if I’m constantly going to be drowning in work and mental problems. Thanksgiving is next week but UMBC only gives us three days of break. How can we have a break if they never gave us the chance to take one. Every one of my friends who go to a different school get way more than just 3 days off. The university and teachers need to realize were all getting burnt out and need some time to breathe. Its so hard to keep up with your work when you can barely do simple tasks on a daily basis. I struggle with a lot and having to do mundane tasks such as writing a 10 page paper make me feel like I’m hopeless and lost. I also struggle with severe anxiety, so I am constantly anxious about big exams and papers which make it nearly impossible to take an hour and relax. I constantly worry about my grades and become overwhelmed with my emotions. I make things very hard for myself because I have such high expectations for my grades and myself. One day I hope to control my emotions and anxiety and give myself a little break from everything.

I may look fine, but it doesn’t mean I feel fine.

The summer before senior year of high school is always one to look forward to. You’re graduating soon, you’ve decided which college you’ll attend, and you’re ready to make it the best year. But while my friends attended pool parties and concerts, I spent most of my summer in the emergency room with an IV stuck in my arm. 

When I was seventeen, I was diagnosed with ulcerative colitis, an inflammatory bowel disease. In simpler terms, I have ulcers in my colon for the rest of my life. This chronic illness of mine is invisible. Invisible illnesses are characterized by an ill person looking healthy but dealing with a condition that affects their daily life. In the span of two weeks, I had lost over fifteen pounds. To others it must’ve looked like I simply lost weight because of a new diet but I was severely malnourished due to my condition. 

All throughout my senior year of high school I was switching between medications that either made my cheeks puff up, my body fatigued or left me hungry all the time—sometimes all three and much more. I was once asked why my cheeks were swelled like a chipmunk, and the reason for that was that I was taking strong steroids. But they didn’t expect that, and I was met with an incredulous look. They probably thought I didn’t “look sick”. While I may look fine, there were so many times that I was fatigued to the point of not being able to get out of bed. It made it difficult to transition into college with an illness, the limitations were endless when I was newly diagnosed. Yet to others I was completely healthy. My pain was invisible.

When someone thinks of a chronically ill person, there’s a particular image that pops up in everyone’s head. They’re either physically impaired or have some specific marker that can label them sick. But there’s more to illnesses than looking sick. So many chronic illnesses are invisible, but they impair daily activities. The Centers for Disease Control and Prevention defines chronic illnesses as “conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both” (About Chronic Diseases).

According to the U.S. Department of Health and Human Services, about 157 million Americans will be affected by chronic illnesses by 2020 and “96% of people with chronic medical conditions live with an illness that is invisible” (Disabled World). 

With learning about chronic illnesses and disabilities in this course, the main premise of this post is that everyone is going through something—whether it’s visible to you or not. Just as you’d be sensitive about asking someone about a visible impairment, it’s equally important to remember the invisible ones. 

Citations

“About Chronic Diseases.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 28 Apr. 2021, www.cdc.gov/chronicdisease/about/index.htm.

Disabled World. “Invisible Disabilities: List and General Information.” Disabled World, Disabled World, 15 Aug. 2021, http://www.disabled-world.com/disability/types/invisible/. 

“Invisible Disabilities List & Information .” UMass Amherst, http://www.umass.edu/studentlife/sites/default/files/documents/pdf/Invisible%20Disabilities%20List%20%26%20Information.pdf. 

Back when the semester first started, I told everyone about my journey and how I have to hide from my family and friends. As the semester went on and I joined the LGBTQ+ Student Union at UMBC, It has made me more comfortable with my journey and sexuality. I’ve been to events and I can honestly say that it has made me a more happier person. I went to my first LGBTQ+ speed dating event and that was amazing! I’m still not completely out to my family and friends who are homophobic and transphobic but I’m getting to that point where I want to tell them and not care or have to hide who I am anymore. Of course I love them and want them in my life but if they can’t accept the real me and the person I am becoming then that’s their fault not mine. I’m so sick and tired looking over my shoulder or being afraid of my family finding out and then being judged! LIKE THIS MY LIFE! If you can’t accept the person I am then there is the DOOR!!! I don’t want that Negative Energy in my Life!!! I want to be free!!! I want to live my life and have this HUGE ASS Weight off my shoulder! (Sorry for the swear word Professor) I’m just getting emotional writing this post lol but Honestly.. This is who I am and This my life!! I still have ways to go but I’m slowly learning more about myself every single day. At the end of this, I just you guys to know that not only am I an Ally but a Member!! and It feels soo Damn Good to say that!!!!!!!!! (Again Sorry in advance).

From a fairly young age I was exposed to those that suffered with both cognitive and physical disabilities as during my first couple of years of elementary school, the institution would host disability awareness days in which we would each partner up with kids with special needs. There would be games and food, just an indoor carnival type vibe. These events really humbled me as I realized the realities that other children faced and saw how they are either unable or have to adjust to ways of life in which society would view as simply “normal” or the “expectation.” After experiencing these bonds with them, I was more socially and consciously aware of the unfortunate negative receptions that they would also get. Towards the end of my elementary school years, I had started attending a summer camp where my mom worked and one of her coworkers also had a son who attended that we will call J. Although J was much older than me and had technically maxed out of the age limit to be a camper his cognitive disability allowed for him to stay much longer. When learning about J and his disability, as elementary schooler it’s understandably difficult to fully comprehend his situation. So, the adults around me always explained his disability to me as basically his brain was similar to that of a two year old’s, like cognitively. When J would speak, it could sometimes be difficult to understand him because he couldn’t really formulate complete sentences and the way he spoke equated to that of a toddler. However, for me, I just saw him as J, I embraced his differences and made sure to be his friend, not treating him any differently. One time during lunch, I was sitting with my friends and J sat at this table with some random girls that started bullying and making fun of him for his disability and it was extremely sad because J started crying. When I saw what was happening, I immediately got up. I stepped in and told them to knock it off and had him sit with me. I was nit going to tolerate that.

Years later, when I was in high school disability became personal within my life once again when another coworker of my mom introduced me to her son that I’ll call JJ who has muscular dystrophy that he developed around the age of eight. This was much different than my previous friendship with J because in this case JJ’s disability was physical as he was in a wheelchair since he is unable to walk, rather than cognitive. Senior year of high school he asked me to go be his prom date in which I so gladly accepted. Being in a compacted area at the prom venue in which there were many long dresses and crowds of people dancing, I could sense JJ start to feel uncomfortable because he felt like he was unable to dance  or maneuver in the so called ‘traditional’ sense. I was not going to allow his disability to define him or make him feel less then, so I got out there and started dancing with him and people even caught on and danced with us.

Lastly, growing up as the youngest child of six kids,  I have seen my fair share of them starting their own families and with that gaining the title of Aunt or Tía as some of them call me. However, during my senior year of high school my family, especially my dad became ecstatic because he was going to be a grandfather! Now this title was nothing abnormal to him because my dad has other grandchildren and a handful more of great-grandchildren. However, what made the birth of this Christmas Eve baby extra special was he would be able to carry the last name. This meant a lot to my family. Our other close family members are predominately girls; therefore, our last name would have most likely ‘gone extinct’ if you will. When we found out she was in labor, we became so excited  However, this excitement quickly shifted to pure terror when the baby was finally born because he lost oxygen over a period time which stopped his brain from working properly. As a result, he has to constantly have his mucus suctioned out manually through a tube since he can’t break it down on his own. He also is unable to hold his neck up on his own or sit up straight. He is unable to speak or move his hands and feet. Pretty much the most he can do is blink and make some noises here and there. His journey has been very hard to witness but we are extremely happy because three years later and he has made progress! He is even going to be starting school which we never thought he’d be able to do with a bus picking him up and everything!

All my life I’ve been a lean 160 pounds at 5’11. When Covid hit I was recovering from a psychoactive episode and was placed on medication, specifically Resperdal .5 mg paired with Prozac. This helped my anxiety tremendously, I went from breaking down and sobbing to grabbing life by its balls- Resperdal also got rid of 90% of my HPPD so I would stop seeing visual snow & tracers as well as other hallucinations- but despite this I managed to pack on quite a bit of weight. At the end of December 2020 I was 190 pounds, and felt happy! Unfortunately those around me did not see it that way, I was astonished.

My father would look at me in disgust, as if I was walking around with vomit ridden shirt and shit smeared underwear- every day he would point out my weight, at the end of every conversation. He would also constantly ask me the dosage of my medication and tell me to reduce it. Instead he insisted a take a drink each night instead like he does. Yeah. I was appalled and I grew depressed, so I talked with my doctor about getting rid of Resperdal. It gave a lot of headaches and nausea but eventually I was able to stop taking it, but by then I was faced with another problem, Alcohol. I had gained an unhealthy addiction to Alcohol, at it’s height I was able to take down an entire bottle of 70 proof Vodka in under 4 hours. Yeah, I had a problem. My weight skyrocketed my weight to 235, by now I was considered Obese.

Here is a 1 year before and after comparison. (I’m a big car guy BTW!)

Even though I was happy and fulfilled others shamed me for my body, even people I’d never in a million years expect too- close friends and family all reminded me of how much of a fat fuck I was every single day, which was ironic because more than half of them were nearly as overweight as me. They had lost all respect for me, even though they remained close they would shame me for being fat. Often I would play along, nearly every time- and laugh it off, haha yes you’re right! Haha yeah but I’m exercising now! How will I ever get married in my shape? The absolute worst of it was people that said they were looking out for me and reminded me every day how fat I am. Yes, I know. I’m fat. I get it, you don’t need to constantly repeat it.

Now I understood. I understood why overweight/obese people had higher rates of depression and anxiety, and it’s because of ignorance and lack of respect, lack of love.

Fuck them. I don’t need their approval. For the longest time I realized that I was just trying to impress everyone, and make everyone around me happy- no. That is the wrong way to live. If I was happy being fat who are you to come and tell me what you think of me? I no longer give a fuck. When I started to lose the weight I had gained the people who had told me I was fat now were telling me of what a good job I was doing and how good I look- fuck them. I’m not doing it for them, I never was and I will never hold the same respect for these people as I once did, the real people I have around me are the ones that didn’t remind me, the ones that treated me the same and minded their own business.

This was such a big moment and experience for me, it made me realize that all my life I’ve put others before myself, they don’t matter as much as I matter to myself. My body is my own, and I accept it. I accept my weight and my skin, I accept my body. I am grateful and appreciative of my body. I love my body, and nothing can make me feel otherwise. Once you stop holding others opinions of you so high you will skyrocket, and that is what I am on the path to doing.

Winters are tough. Fewer hours of sunlight, the cold weather, and the abundance of everyone getting boo-ed up. It’s safe to say that a lot of people feel lonely during these holiday months and it’s imperative too since you sometimes need someone to keep you warm and keep you company. The holidays are also a time where families get together and rejoice with each other. But, damn, my ass is single AGAIN this year.

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“Only by learning to live in harmony with your contradictions can you keep it all afloat” Audre Lorde

Most people have seen this toy. It has evolved over the years but it’s still the same toy.  As a child, you would spend time trying to fit all the shapes into the proper cutout. Then you watch how excited the toddler gets when they have successfully placed all the shapes..correctly.  After a while, the shape puzzle is no longer satisfying. Then you begin to try and fit shapes into holes they were not designed for. Yep. you twist, pound, punch whatever it takes to manipulate that square shape into the rectangular cutout, or the star into the circle, the circle into the octagon. You get the picture. Looks like it should fit. Right?

It’s harder than it looks.

get frustrated, throw a tantrum, throw the toy

Eventually… success!

But when you look at it, it’s misshapen!

It’s distorted!

It doesn’t… fit right.

And after all that you don’t feel the satisfaction, you THOUGHT it would bring.

Well, trying to fit me into a mold has always been my life. And in the past, I have become quite frustrated when I tried to squeeze myself into a mold that didn’t fit.

Misshapen.

Distorted.

Unsatisfied.

I have made…” well you don’t look…”

This resting bitch face has come in handy when I get tired of being asked

the same…damn…questions. As if by repeatedly asking me you’ll trick me into saying something so they can have that Ah-ha moment. Ah-ha my ass. Keep waiting.

I never had childhood crushes.

Never fantasied about a celebrity.

Never talked openly about my sexual conquest.

Or should I say lack thereof?

Never been…in love.

But “everybody likes one or the other or both.

Right? So, I thought.

Not heterosexual. Maybe you just haven’t met the right man.

Not Lesbian. Maybe you just haven’t met the right woman.

These newfangled definitions might say pansexual. I don’t.  Some might even say asexual.  I don’t.

 But I am ok with whatever someone wants to call me. Because as RuPaul says’ “what other people think of me, is not my problem.”.  YEP!! Took me years to be able to say that out loud.

I lack asexual orientation and I am unbothered by that.

Never ever met someone who does not have a sexual identity. I am a Unicorn. Well, maybe I’m not but in my own mind…

My bestie in my head says, “if i didn’t define myself for myself, than I would be crunched into other’ peoples fantasies for me and eaten alive.”

So if I must define myself I say I am unapologetically black, woman, feminist, mother, sister, a damn good friend, lover of learning.

For the first time since high school, a professor has asked my class to not use the bathroom. She claims its too distracting. The standing up, sitting back down, opening the door, closing it again, walking through the aisle. All of this would hinder learning, so she says. What’s really distracting to me is having to pee all throughout class and having to hold it in.

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