"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.

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

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Invisible Disabilities

My Story

Not All Disabilities are Visible.

I have contemplated and debating publishing my first article. Writing has always been something that has been therapeutic for me. I am a very confident, strong young woman with my whole life ahead of me. However, it is time for me to acknowledge something very personal to me that up until now besides my family and three of my good friends.

There is no manual on how to be a successful person with a disability. The piece about my disability I do typically disclose is that I was born with a condition called congenital hydrocephalus. The way it affects people varies. I am thankful that I am one of the people that can function on a relatively normal level—for that I am eternally grateful.

The biggest obstacle I have had to overcome/learn to adapt to involve spatial relations. What people do tend to notice are my hand tremors—which I also attribute to my mental health battle with anxiety. I also learned how to ride a bike a bit later than those the same age. To this day, I am unable to drive myself independently and at this point, I may or may not ever be able to drive a car independently. Up until now, I have been ashamed and embarrassed that I have been unable to drive independently. I have been ashamed and embarrassed by something I cannot change about myself.

I read an interesting article that I urge you to read—especially if you care about me in any capacity. I want people to understand more about hydrocephalus—there are less than 200,000 cases diagnosed in a year. I have a VP shunt which was first placed the day I was born—however; it wound up getting infected the second day and a new one had to be placed. To this day I have only had two shunt revisions. The second revision was back in 1997 or 1998 when I was two or three years old. The most recent revision was done back in December 2008. I have had this current shunt for less than ten years. Others diagnosed with hydrocephalus can go through many revisions.

I urge you to research about congenital hydrocephalus and hydrocephalus in general. I would also like to invite you to ask me questions about my condition. From this day forward, I am no longer allowing my condition to embarrass me. I am a strong, confident, beautiful twenty-two-year-old young woman who is so much more than a medical condition.

Cover Image Credit: https://www.pinterest.com/pin/428475352032338581/?lp=true

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Social Media Changed My Perspective On Living With Diabetes

Thank you for changing my life, Instagram.

I have been living with Diabetes for over 16 years now, and am inching closer to that 17-year mark. I have gone through many different stages in how I choose to look at living with a chronic illness. I have gone through stages of denial, anger, sadness and every other emotion you can think of.

Lately, however, I have been overcome with a sense of motivation that has absolutely changed my outlook on this horrific disease.

My motivation to take care of myself with regard to my Diabetes didn’t start until I was a freshman in college, which is something that I wholeheartedly regret. At that point in time, I was my own source of motivation to do well. I was also my own worst enemy by really getting down on myself when things didn’t go exactly how I wanted them to in terms of my blood sugar.

It wasn’t until this past summer when I came across an entire Type 1 Diabetes community online that I realized how common everything I was feeling is.

There are two main outlets that I use: Instagram and Beyond Type 1. Beyond Type 1 is a forum type of application where fellow Diabetics can share their questions, tips, struggles, successes and more.

Of these two applications, Instagram has made the largest impact on me.

I have always known that Diabetes (type 1, specifically) is not as uncommon as it feels. But, when you are living with something that takes up every ounce of your energy, you can’t help but to feel alone in the battle.

It wasn’t until I randomly came across Type 1 Diabetes focused accounts on Instagram that I started to feel like I wasn’t alone in this and that there were others out there that truly understood what I was going through, and not just people who sympathized with me.

When I saw that others were going through the same things as me, I started to feel a sense of comfort in this disease. I started to realize that everything that didn’t go my way was going to be ok.

I have been able to both give and receive advice, and I have come to realize that you truly never stop learning about the ins and outs of Diabetes.

The amount that I have learned from others is miraculous in my eyes. I have also been able to gain more insights on tricks that I can use to maintain my health and foods that are good/bad for blood sugar that I would never have considered before. I have been introduced to a whole support system that I never thought existed.

There are dangers of this, though. I find that it is easy to put yourself in comparison with others, especially those who seem to be doing better than you. Of course, this is something that has to be taken with a grain of salt because not everyone is as transparent on social media as you would hope.

I must admit, as well, that I have found myself to become even more obsessive about my blood sugars than I ever have before. It is frustrating, and it is easy to be hard on myself, but it has also led me to be the healthiest that I have ever been.

The best thing that I have taken out of all of this is the confidence in sharing this disease and being open about it in a more public manner. I have always been open about educating people on the disease, and I have never been closed off when people ask me questions about it.

I was, however, very secretive in allowing Diabetes to be something visible on me. What I mean by this is that I never liked to check my blood in public, and I never wanted people to be able to see my insulin pump.

Now, however, I proudly wear my pump in some of the most visible parts of my body and have nothing but confidence about it! So, thank you Instagram. You have truly changed my life for the better.

Cover Image Credit: Pexels

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