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“Good” days, “bad” days: These pictures were taken two days apart. The first picture was on a Monday, when I was able to go to class and put makeup on. The second is from a Wednesday, when I had to miss class to get blood work done at the hospital because I was sick.

Attending college with a chronic illness isn’t easy, and as it’s now the end of the semester, the stress just piles on. I only have Monday/Wednesday classes, as well as online classes, and even that can be too hard to manage at times.

In the first picture, despite it being a “good” day, I still accidentally napped on the couch because of how fatigued I was just from spending three hours in class.

In the second picture, I couldn’t even move for hours. I was in contact with my doctor, who told me to get my labs done. This is something I have to do often. Missing class is something I hate to do, but on that day, it had to be done for my health.

The unpredictability of my illnesses makes it so difficult to plan, to keep up, to function. Even looking at these pictures, you wouldn’t know I was sick on either of these days. I think that’s one thing people have a hard time understanding, is that my body is constantly fighting against me. Some days, I fight back. Others, I have to admit defeat.

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Medication, Part 2: For all the medicine that does help me, there have been many attempts at other medications that have failed me. These medicines, had they succeeded, would have possibly increased symptom management. Recently, I had to cross another medication off my list, as I reacted negatively to it.

This medicine would have hopefully helped my gastroparesis symptoms, as those have been setting me back quite a lot lately. It was a long battle trying to even get this medicine, with insurance initially not wanting to cover it.

For months, I had the hope for this medicine, and in a matter of days, that hope went down the drain. This text conversation with my gastroenterologist is the best example I have of what a failed attempt looks and feels like. Here I am, having to deal with the unpredictable symptoms that keep me from fully functioning, and then there’s my doctor who is at a loss of what to do for me next.

Because I already am on so many medications and have other health issues, it’s not easy to just start new medicines that have worked for other people with this condition. Especially since I have had negative reactions to a lot of what we’ve tried, it makes us even more wary.

Although this post is unorthodox compared to my others, there just truly is no way I could imagine demonstrating where I am with my health right now but to show that even my doctor feels a bit lost. I’m lucky to have the doctors I have, but I also am at a very strange point in this journey. Even though I hide these feelings and symptoms away from people, I know I need to make those more visible too.

“Chronic” means forever, and no matter how many pills I take, sometimes that is the toughest one to swallow.

 

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Disability: “An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.”

What people don’t understand is that I am disabled. The government recognizes it, my university recognizes it, my doctors recognize it. But because I don’t look like I have disabilities, people are ready to dismiss them.

People usually assume that if you’re in a wheelchair, you can’t walk. They don’t always understand that my wheelchair is as-needed; in my case, it’s for instances I can’t stand or walk for long periods of time, such as concerts, theme parks, even malls. I’ve also used my wheelchair when I’m having a low-energy day, or when I’ve had to make an emergency trip to the hospital.

As for my disability placard, all people see when I use it is it someone who doesn’t need it…but I do. I rarely go out to shop any more, and instead utilize online shopping as often as possible. However, sometimes there are things I need more quickly, such as food, that require I make a quick trip to the store. Regardless, if I am feeling well enough on that day, I try to find parking that isn’t handicap, but still nearby. This is for a few reasons. 1. There may be someone who needs the spot more than I do. 2. People have started shaming those with invisible disabilities into using the parking spots, despite having a placard.

I have even had a man berate me for using the handicap parking spot, and despite my best efforts to inform him that I had an invisible disability, he continued to be rude. This is why it’s so important to spread awareness of invisible ailments. Because people are so quick to judge a person’s health based on appearance alone, it’s necessary that we inform them that there is a war being waged inside our bodies that doesn’t affect how we look.

 

*Shirt is from this website, which promotes changing the perception of disability.

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Hospitals: In an unexpected turn of events, I began my Spring Break by making a trip to the ER. Now, I’m no stranger to the hospital. I go sometimes as frequently as every month to get lab work done, to check certain levels (such as Potassium) in my body.

Now, I wasn’t planning on taking a picture at the hospital for this project, but the opportunity was there and I couldn’t waste it.

What sent me to the ER this time was a combination of an infection and a gastroparesis flare up. Essentially, gastroparesis is defined as “stomach paralysis”, meaning low motility that causes unpleasant symptoms. [You can read more on gastroparesis here.]

Something as simple as an infection can cause me to nearly faint and need IV fluids. On this night, blood was drawn, a CT scan was done, and I was administered Benadryl which left me very woozy.

I came into the hospital that night prepared with my hospital bag, my blanket, and my “sick teddy”, because I expected to be admitted. (It wouldn’t have been the first time.) Living with a chronic, invisible illness means preparing for the worst. This may be one of the few times I look as sick as I feel, but it takes a hospital gown and an IV sticking in my arm to accomplish that.

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Hydration/ Alcohol: I have postural orthostatic tachycardia syndrome, which is a form of dysautonomia. [You can learn more here.] Essentially, I have low blood pressure upon standing, so I am on a high salt diet. Gatorade and G2 help with the salt, while also providing the electrolytes my body needs. It’s commonly said that we constantly feel like we’re running a marathon, which is all too true.

Since I am on a lot of medication that would interact with alcohol, I can not and do not drink it. It would also mess with my hydration levels, which is essential in not being symptomatic.

I’m 24, but when I go out with friends, I can’t drink (which they do). Not even sodas. I often feel like the odd one out with my peers anyway, because I have these limits and restrictions due to my health. Some people may just see a girl with Gatorade, but it’s really someone trying to manage her symptoms long enough to enjoy time with friends.

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Medication: My day revolves around taking the right medicine at the right times. I have alarms set on my phone, an app that tracks what medicine I take and when, and the people at the pharmacy know me by name.

My illness has no cure or treatment. It’s just a management of symptoms with medication, some of which have been trial-and-error.

In this picture, these are all the pill bottles in my bag, for all the medicine I take in a day. *For sanitary purposes, the “pills” in my hand and on the floor are mints.

I don’t tote around all of this medicine, so when people see me taking a pill or two in public, they don’t assume that I’m chronically sick. What may look like a girl taking a regular pill, is actually a girl taking the medicine that will determine if she can manage through the day or not.

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Compression socks: Although they may look like pantyhose, they are used to keep the blood from pooling in my legs so that I don’t pass out. They’re so tight, it usually takes me five minutes to put both of them on my legs.

How they are hidden: Under tights, pants, socks, or long dresses. In other words, I can’t wear shorts in the summer.

Sometimes what may seem normal, is actually just someone with an invisible illness doing their best to appear normal.