"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.
93
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

Yes, I Had A Stroke And I'm Only 20

Sometimes bad things happen to good people.
27156
views

Recently, I read an article on Cosmo that was written by a woman that had a stroke at the ripe old age of 23. For those of you who don't know, that really doesn't happen. Young people don't have strokes. Some do, but it's so incredibly uncommon that it rarely crosses most people's minds. Her piece was really moving, and I related a lot -- because I had a stroke at 20.

It started as a simple headache. I didn't think much of it because I get headaches pretty often. At the time, I worked for my parents, and I texted my mom to tell her that I'd be late to work because of the pain. I had never experienced a headache like that, but I figured it still wasn't something to worry about. I went about my normal routine, and it steadily got worse. It got to the point that I literally threw up from the pain. My mom told me to take some Tylenol, but I couldn't get to our kitchen. I figured that since I was already in the bathroom, I would just take a shower and hope that the hot steam would relax my muscles, and get rid of my headache. So I turned the water on in the shower, and I waited for it to get hot.

At this point, I was sweating. I've never been that warm in my life. My head was still killing me. I was sitting on the floor of the bathroom, trying to at least cope with the pain. Finally, I decided that I needed to go to the hospital. I picked up my phone to call 911, but I couldn't see the screen. I couldn't read anything. I laid down on the floor and tried to swipe from the lock screen to the emergency call screen, but I couldn't even manage that. My fine motor skills were completely gone. My fingers wouldn't cooperate, even though I knew what buttons needed to be pressed. Instead of swiping to the emergency call screen, I threw my phone across the room. "Okay," I thought, "Large muscle groups are working. Small ones are not".

I tried getting up. That also wasn't happening. I was so unstable that I couldn't stay standing. I tried turning off the running water of the shower, but couldn't move the faucet. Eventually, I gave up on trying to move anywhere. "At what point do I just give up and lie on the floor until someone finds me?" That was the point. I ended up lying on the floor for two hours until my dad came home and found me.

During that two hours, I couldn't hear. My ears were roaring, not even ringing. I tried to yell, but I couldn't form a sentence. I was simply stuck, and couldn't do anything about it. I still had no idea what was going on.

When the ambulance finally got there, they put me on a stretcher and loaded me into the back. "Are you afraid of needles or anything?" asked one EMT. "Terrified," I responded, and she started an IV without hesitation. To this day, I don't know if that word actually came out of my mouth, but I'm so glad she started the IV. She started pumping pain medicine, but it didn't seem to be doing anything.

We got to the hospital, and the doctors there were going to treat me for a migraine and send me on my merry way. This was obviously not a migraine. When I could finally speak again, they kept asking if I was prone to migraines. "I've never had a migraine in my whole life," I would say. "Do you do any drugs?" they would ask. "No," I repeated over and over. At this point, I was fading in and out of consciousness, probably from the pain or the pain medicine.

At one point, I heard the doctors say that they couldn't handle whatever was wrong with me at our local hospital and that I would need to be flown somewhere. They decided on University of Maryland in Baltimore. My parents asked if I wanted them to wait with me or start driving, so I had them leave.

The helicopter arrived soon after, and I was loaded into it. 45 minutes later, I was in Baltimore. That was the last thing I remember. The next thing I remember was being in the hospital two weeks later. I had a drain in my head, a central port, and an IV. I honestly didn't know what had happened to me.

As it turns out, I was born with a blood vessel malformation called an AVM. Blood vessels and arteries are supposed to pass blood to one another smoothly, and mine simply weren't. I basically had a knot of blood vessels in my brain that had swelled and almost burst. There was fluid in my brain that wouldn't drain, which was why my head still hurt so bad. The doctors couldn't see through the blood and fluid to operate, so they were simply monitoring me at that point.

When they could finally see, they went in to embolize my aneurysm and try to kill the AVM. After a successful procedure, my headache was finally starting to subside. It had gone from a 10 on the pain scale (which I don't remember), to a 6 (which was when I had started to be conscious), and then down to a 2.

I went to rehab after I was discharged from the hospital, I went to rehab. There, I learned simple things like how to walk and balance, and we tested my fine motor skills to make sure that I could still play the flute. Rehab was both physically and emotionally difficult. I was constantly exhausted.

I still have a few lingering issues from the whole ordeal. I have a tremor in one hand, and I'm mostly deaf in one ear. I still get headaches sometimes, but that's just my brain getting used to regular blood flow. I sleep a lot and slur my words as I get tired. While I still have a few deficits, I'm lucky to even be alive.

Cover Image Credit: Neve McClymont

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

4 Best Ways To Deal With The Ear Infection Pain Caused By Strep Throat

The pain will make you cry, I promise.

125
views

I have recently, like one day ago, gotten diagnosed with strep throat. Which you would think would mean that my throat would be killing me, right? But no, my friends, it is my ears that are killing me.

Apparently, due to the sinuses built up, your ears hurt a ridiculous amount. No seriously, this is the worst pain I have ever experienced in my life. I mean like crying as if you're a baby and all you can think about is getting the pain to stop. Also, forget sleep, that won't happen if you're in pain.

Well, these are a few of the things that helped me while I was in the middle of this insane period of just wanting it all to end.

1. Sit up in bed. 

Duncan Shaffer

When you are in bed trying to sleep and your right ear, the traitor, decides to act up, it's time to sit up.

I don't know if it's because shit drains or what. Frankly, when you're in so much pain you're considering taking another pain pill, you won't either. Why it works doesn't matter. Sit up as straight as you can and breathe. Slouching won't work - you have to be sitting up straight.

2. Stretch your neck. 

Tanja Heffner

This is just like number one in which I don't know why it works or how it makes things feel better, but it's a miracle worker. I went from crying in pain to being able to finally sleep thanks to this trick. It's the best thing I can think of giving you for almost instant relief.

It won't be the fastest thing ever and it will cause you some discomfort, but the end result is the light at the end of a tunnel. It's how I managed to get an hour of sleep because somehow it was finally better.

3. Wash your hands. 

rawpixel

Strep throat is one of the most contagious diseases ever. Okay, I'll stop being dramatic for a second. It's probably not, but it is super easy to catch and super annoying to deal with.

Wash your hands and make sure to not touch anything someone else will, or he or she may catch it. Or even worse, you get better only to get sick again because someone else didn't clean the surfaces touched while sick.

4. Go to the clinic. 

rawpixel

Seriously, it's on campus and super easy to use. I got to see a medical professional on the same day I walked in. The process was super easy, and I managed to get everything I needed taken care of.

I signed a few forms and got to see a very nice doctor who also told me about many of the other things UCF Health Services offers. She prescribed me some pills I had to take and it was all over in a matter of minutes. I even picked up the prescription downstairs without giving them my name!

I hope this helps anyone who is in pain and desperately needs some relief. Strep throat is the worst and I feel bad for anyone caught in the middle of it. I am with you. Hopefully, our pain eases soon.

Related Content

Facebook Comments