"But You Don't Look Sick": The Challenge of Invisible Disabilities

"But You Don't Look Sick": The Challenge of Invisible Disabilities

Just because you can't see sickness, doesn't mean it isn't there.
85
views

Ever since I was little, my mom has been sick. My life has been filled with ups and downs surrounding my mom's health, and the guilt I carry because of it - she was told not to have me because I would worsen her health, but she chose to do so anyway and so began her struggle with being disabled. She has dormant lupus, fibromyalgia, arthritis, chronic migraines, and a flurry of other health issues that make it difficult for her to do daily activities. It is something that we, as a family, have always dealt with and it is normal to us, unfortunately, that my mom can't do things other moms can do. While I wished for her health, it never occurred to me that I had a very different life than other people. Small things in my life, like going with her to doctor appointments, parking in disability spaces, and having to go to the hospital weren't weird to me like it sounds weird to most other people. Most people are surprised because, on the outside, my mom doesn't look sick. Her outward appearance doesn't scream disabled, and so it is hard for people to imagine the daily difficulties she goes through. With my mom, I started my lifelong experience with invisible disabilities.

In high school, I was constantly tired. I woke up tired, no matter how many hours of sleep I got. I had to wake up at 6 AM to catch the bus, and I dreaded it. Some days I had to drag myself from my bed and others I cried from how difficult it was. I made assumptions such as not maintaining a healthy diet, stress, and not getting enough sleep. My legs would pulse when I walked upstairs, and thus I assumed I was out of shape. I thought everyone lived with the constant burden of being in pain, and I thought the pain was just being tired. I marveled at athletes who had so much energy to do after school activities when I just rushed home to lay down. I turned down opportunities which made people think I was lazy, and I wouldn't go out with friends because I didn't have the energy. I struggled to concentrate and I thought I just wasn't academic. I was constantly riddled with stomach problems that kept me home, and so I was always truant. My father would yell at me, telling me that it was in my head and I had to go to school, and so I assumed that he was right.

After four or five years of living in constant pain, my mom took me to a rheumatologist. He asked me extensive questions and did an examination in which he applied pressure to certain areas of my body, which was painful. He then told me I had fibromyalgia, and it all made sense, it all clicked. Not much is known about fibromyalgia, except that it is a chronic pain disorder that causes widespread, full body pain in your muscles, ligaments, and tendons. It causes stomach issues, insomnia, fatigue, migraines, depression, and many other symptoms of varying intensity. I felt like a weight had been lifted from my shoulders, now knowing what was wrong with me. But it wouldn't be the end of my struggle with fibro: it has no cure, and no doctor is willing to give pain medication to a teenager (I was 17 when I was diagnosed) which meant I had to try over the counter medications that only targeted certain symptoms in order to help my health overall. In other words, I had to continue to deal with it, and when I lost my health insurance at 18, going to professionals was almost completely out of the question. I continue to struggle with pain, and with flare-ups, which are periods in which the pain is more intense and makes doing minor activities incredibly difficult.

I have actively chosen to not write or publicly discuss my health with anyone except a few family members and friends, and much of it comes out of fear of the stigma that surrounds invisible disabilities. From outward appearances, I don't look sick, and I still get the occasional comment about being lazy or not "trying hard enough" to be well - that fibro doesn't exist, etc. I at times tell professors in case I am absent often, but even that makes me nervous - but why? Fibromyalgia is a medical diagnosis, my medical diagnosis, but because I don't appear sick, it becomes difficult to "prove" my sickness. My mom uses a handicap placard, and this past year's placard came late. She had to reorder it and was without it for about two months, at which time she was nervous to go out. Upon realization, I understood that my mom's anxiety stemmed from the fact that she doesn't look sick, so her fear was that she would be questioned about her illness and not believed. She is legally disabled but without that blue piece of plastic, her sickness can be denied - someone can question my mom and tell her that she doesn't look sick, so she must not be sick. To her, and to our family, it is very real, but to the public, disability is defined by looking sick, and so my mom's disability and my own struggle with pain has to be proven, and is still, even then, doubted.

A recent conversation with my older sister about invisible disabilities is what made me want to write this article. My sister, who herself has been dealing with illness for the past few years, shared her own accounts with being sick. Her illness drains her of energy and makes working her job, which entails long hours and constant moving around, difficult and nearly impossible at times. She lives in the bay area, so she takes buses to and from work. One evening, in which she was especially not feeling well, she had to stand while someone else's backpack took up an available space. Because of her pain and exhaustion from working a long day, she scooted the person's backpack aside a few inches to make space so she could sit down - and was met with annoyed and surprised glares and glances. She explained to me that it was then that she realized that she doesn't look sick, she looks like a healthy 30 something-year-old woman, and so the fact that she moved someone's personal belongings to sit down made her look rude, lazy, and the like. Again, no one thought she looked sick and so no one assumed that she had to sit down. In her social life, her friends don't realize how ill she is until they are there to see her at her worst. Small moments in which people who are disabled can't do things, like preferring to take the elevator instead of stairs, not being able to finish meals, deciding not to go out or attend class because of illness are all things that people can see in a moment, and are only a small part of the bigger picture. But you shouldn't have to see someone at their worst to believe them when they say they are suffering, just because their suffering is not transparent.

Small moments like these make it apparent that invisible disabilities are very real, but are socially incredibly difficult to have - they constantly have to be proven, and are constantly a worry to people that have them within their communities. If you have someone in your life that suffers from a disability or is chronically ill, don't feel awkward to talk to them about it. They are not defined by their sickness, and disability is not their identity - pain is not my identity. It is okay to ask questions, to try and understand them if you do not understand them. But don't treat them like an anomaly. A way to help this, if you don't have an ill person in your life, is to not define normalcy and health as physically looking well, because you never know how someone is feeling and what they are going through. Disabled people should not have to prove themselves and carry the burden of proving their sickness to a public that doesn't understand the complexity of health and constantly questions their accountability. By changing the discussion surrounding disabilities, we can hopefully begin to slowly create an inclusive conversation that includes those with invisible disabilities and allows them to be in spaces that accept them, instead of denying them.


Cover Image Credit: Daily Medical News

Popular Right Now

Everything You Need To Know About BANG Energy Drinks

Say goodbye to your favorite pre-workout drink.
220722
views

BANG energy drinks from VPX Sports are the hottest new products for athletes everywhere. On every can, you'll find their catchphrase "Potent Brain & Body Fuel" and it gives you just that. Clean energy, laser-sharp focus, and no sugar induced crashes are just a few of the reasons these bad boys are flying off the shelves faster than retailers can keep them stocked. Haven't heard of them? Sound too good to be true? Let me answer your questions.

What is it? It's an energy drink that's kind of like your typical Red Bull or Monster. It's a perfect substitution for pre-workout supplements or coffee.

Who's it meant for? Anyone! A better question to ask is, "Who isn't this drink meant for?" On the can, you'll find a recommendation for no one under the age of 18 to consume the drink. You also may want to steer clear of it if you're sensitive to stimulants like caffeine.

What's in it? BANG energy drinks contain zero calories, zero carbohydrates, and zero sugar. But what you can find are BCAA's, CoQ10, creatine, and copious amounts of caffeine. These are things athletes often take as supplements.

What are BCAA's? BCAA's are Branched Chain Amino Acids. They are known to stimulate protein synthesis, increase muscle function, decrease your soreness after a workout, and even aid in repairing damaged muscles.

What's CoQ10? Coenzyme Q10 is found in the mitochondria of your cells and sparks energy production. It helps produce energy your body needs for cell growth and maintenance. People often take this as a dietary supplement when they feel tired or lethargic.

What's super creatine? Creatine does a great job in enhancing athletic performance by aiding growth of lean body mass (AKA muscle). When you take creatine orally, the amount in your muscles increase and helps regenerate ATP more efficiently. According to the nutrition label, this so-called "super" creatine is bonded to Leucine to make Creatyl-L-Leucine. On SupplementReviews.com, a VPX Sports representative allegedly said the following about the Super Creatine in the drink:

"The creatine in there is actually something very special...it is the world's only water stable creatine. It is Creatine-Leucine peptide. Think of this...if you mix creatine in water, it sinks and if you mix leucine in water, it floats....if you combine the two into a peptide, it creates a water soluble and water-stable form of creatine. It also has a fatty acid chain that makes it easier to cross the blood brain barrier. The focus of the super creatine is not for muscle function, but for cognition...by combining this form of creatine with caffeine, it works synergistically for mental focus."

How much caffeine is in one can? In one can of BANG, you'll be blessed with 300mg of caffeine. This is the equivalent to over three cups of coffee.

Is that even safe? Yeah, it is. In order for the caffeine in the energy drink to be lethal at any capacity, I would have to drink 30.7 cans.

So, what are the downsides? There are two things that come to mind. One is that consumers have no idea how much BCAA's, CoQ10, or creatine is actually in the drink. It could very likely be trace amounts too small to do anything beneficial. Two, BANG energy drinks do not go through the FDA approval process.

Is it really that good? Well, out of 113 reviews of the product on Bodybuilding.com, there's an average 9.6 overall rating. Most reviews comment on the quality of the energy, the cognitive focus, and the non-existent crash once the drink wears off.

What kind of flavors can I get? There are currently eight BANG energy drink flavors on the market: Black Cherry Vanilla, Cotton Candy, Sour Heads, Star Blast, Blue Razz, Champagne Cola, Power Punch, and Lemon Drop.

Where can I buy BANG energy drinks? You can find BANG energy drinks at Amazon, your local GNC or Vitamin Shoppe retailers, Bodybuilding.com, VPX Sports' website, some gas stations, and privately owned retailers.

How expensive are they? This depends on where you make your purchase. The cheapest place to purchase your BANG energy drinks is at Bodybuilding.com for about $2.00 per can. You can find similar prices on Amazon and at your local retailers. The energy drinks are most expensive through the VPX website where you'll pay about $2.75 per can.

How does BANG compare to other energy drinks? I'll give you some data on nutrition facts and you can make your decisions based on that:

16 oz. BANG: 300mg caffeine, 0g carbohydrates, 0g sugar.

16 oz. Monster Energy (regular): 160mg caffeine, 54g carbohydrates, 54g sugar

16 oz. Red Bull (regular): 160mg caffeine, 56g carbohydrates, 56g sugar

16 oz. Rockstar (regular): 144g caffeine, 54g carbohydrates, 54g sugar

Cover Image Credit: Youtube

Related Content

Connect with a generation
of new voices.

We are students, thinkers, influencers, and communities sharing our ideas with the world. Join our platform to create and discover content that actually matters to you.

Learn more Start Creating

To My Aunt, As She Battles Cancer

As my second mother battles cancer, I can't just sit here and watch.

119
views

My aunt always claims, "You're supposed to my daughter, your mother just birthed you for me."

I am overwhelmed in honor that you see us as so similar, for I would be blessed to be half the woman you are, and the warrior I have watched you become.

Since the day I was born, you have pretty much claimed me as your own. You didn't give anyone a choice. I am your birthday gift on this Earth, so obviously, I belong to you. Just like that, we have been tied to each other's hips my entire life.

A true mother-daughter relationship blossomed so quickly and continues to grow every single day. I am forever thankful to have you.

You were the one I ran to. The one I cried too when no one else understood my tears. The one who gave me strength when I was barely waking up in the morning to see the light. The one who dragged me to church even when it was the last thing I wanted. You were my escape and solitude. You somehow knew everything I ever needed, and provided it, even from states away, and now from a different country. You're my soul mother. You were always there for me, and now it's my turn to care for you.

There is one word that shakes medical professionals and families all over the world. The one disease we pray is not our diagnosis. The one disease that ails every move we make: what we eat, drink, smoke, put on our skin, everything we do, we do to avoid this thing. This monster. The "C"-word my family has unfortunately become so accustomed to.

Cancer.

One year and five months ago, my aunt, my second mother, was diagnosed with terminal stage four cancer. She was given one to three years to live, "if she's lucky" upon her diagnosis. The doctors then told her she needed to be on chemotherapy for the rest of her life. It's like they had given her a life sentence no one ever expected.

How do you even be ready for something like that? How does one even anticipate it?

I am so terrified of leaving her side now, praying it is not the last time I get the chance to be with her.

By some miracle, here we are about a year and a half later, and instead of deteriorating with her condition, I have watched my aunt become the strongest woman in the world.

To those of you battling cancer, please know:

You are not alone. Every day, every breath we take, millions of prayers are sent straight to Heaven on your behalf. We are your support system, your rock, and we will not leave you.

We will bend over backward to see you smile and make sure you're comfortable. We don't mean to be overbearing or make you feel like a burden, we just want to make you smile, a real smile, a smile bright enough to forget your pain, even if for a moment in time.

They say that faith as small as a mustard seed can move mountains. So let's have enough faith to move every cancer cell in your body over a damn mountain. I know it isn't easy. I know it gets hopeless and scary sometimes. But God is above all medicine, above all ailments, and above all fear. God is in control and He will not forsake you.

You are not an inconvenience and you do not deserve this. No one chooses such a diagnosis. But you are all angels who we never see complain… You continue to endure your pain and fight your battle, and you do this for us. We must, in fact, be your burden since you are going through all this just to stick around for us a bit longer, but alas, we want to be your strength.

I remember hearing my 48-year-old aunt pray to God in full faith and submission for just another twenty years. "Please God… I need to see my daughter and my niece get married. I need to be here for my grandchildren and to care for my mother, and most importantly, to honor Your name. Just twenty more years, please God, but I will succumb to Your will whatever that may be…"

It was the most humbling, yet heart-wrenching prayer I've ever heard upon her lips. I was instantly brought to tears, and my heart, instead of breaking, hardened. I can't let this thing take her. I won't.

I imagine many patients all over the world utter the same prayer upon their tortured lips.

We want to be your reason to fight, your shoulder to cry on, and your caregiver. Not because we have to, but because we want to.

To my aunt, so fiercely fighting this monster.

I am your niece. Your soul daughter. I am supposed to be your strength and your rock. The one who prays for you, with you, and holds your hand when I visit. The one whose shoulder you cry on and listens to your concerns. The one who writes you songs just to make you smile. The one you vent to, and I'm supposed to take it. I have to be strong for you, your daughter, my mother, and your mother.

But sometimes, just sometimes, it breaks me. You'll never see it. But sometimes I find myself falling apart, praying for a way I can take away your pain, asking God, "Why wasn't it me instead?" You don't deserve this. No one does. But definitely not you.

I chose to fight this battle with you. I am happy to be here, and I am so thankful you are still here too. I will never leave you. I will never rest, I will never lay low to my heavy eyes and burdened heart until you are healed - until I see you running marathons and sipping margaritas in the Bahamas, as you so often say… we will get you there. We will get you the best doctors in the world, with the latest research and fondest medical technology. You are worth the blood of Jesus Christ, which makes you PRICELESS — don't forget that!

Thank you. Thank you for teaching me how to be a strong woman so I can be a strong woman for you. I'm not sure I can empower you as well as you did me. I'll never be as amazing as you are, but I will sure as hell try. For you.

God will not forsake you and neither will I.

Never forget.

You are loved and supported, no matter what.

Never forget.

Faith leads to miracles.

Never forget.

WE GOT THIS.

Never forget.

And lastly, thank you for battling a war you never signed up for just to be here for us. I know it's a lot. I cannot begin to comprehend what you and other patients must endure in this wretched disease but I will assure you one thing:

You are my whole world, and I will hold it up even with broken arms. I refuse to see you crumble. You are strong and admire you for that. I love you.

Cover Image Credit:

Marina Khalil

Related Content

Facebook Comments