When you first come to a college they are going to promise you a thousand things. Nothing negative is EVER going to be said at that college. Then you get there……and you realize it is not all that it is cracked up to be. You are promised to be equally treated, that you will stand out, and the four years that you spend your life there is going to be amazing. Just because you go to a Christian College don’t expect help when you need it even though you were promised. Like the President of my college told me, we may be a Christian College but we are a business.
On year ago I was diagnosed. I will give my college some credit. The professors there are willing to work with you and want to help you succeed. That is the TRUTH. My professors have been amazing and nothing short of supportive. They have been understanding when I don’t feel well in class. They understand if I have to run out vomit in the toilet because my POTS makes me nauseated.
Here is when the disappointment comes in, the school did not want me initially back. In fact, they saw epilepsy and POTS as a behavioral problem. I was already nervous enough coming back with two chronic illnesses that I did not understand yet, but then being called to the dean’s office to discuss your “behavioral problems” (otherwise known as an epileptic seizure and a blip in my autonomic nervous system) was humiliating. I was thinking since they were a Christian College they would be understanding. No, instead I found out I can make the Christian College atmosphere look bad if I had a seizure. But hey, that is just business.
Disappointment number two, I need the handicap room because I need the shower rails and the chair. If I don’t have those things I will pass out in the shower. They gave it to me but with an extra fee. It is a single person room and there is no way someone else can fit in. Besides, that I can not have a roommate. It will not be fair to her or me both. I need to be left alone when I am feeling bad. She needs to be able to study and sleep. She can’t do that if I am in a ball crying on the floor because I am in chronic pain. The President of my college is ignoring these facts and wants to move me to a room with a normal shower so I can have a roommate. So this “Christian College” who claims they are looking out for the welfare of their students, is willing to put me into a situation where I can fall in the shower and potentially break my neck or possibly drown. If I left the room I am in now you know who would be living there currently? Nobody. They would have an empty room. What kind of people are willing to do that after they have gotten warnings from different doctors. Hey, though if they move me and I hit my head,break my neck, or drown, they have been warned by two different doctors and the world would find out.
So “Christian College” thanks for the so called accommodations you have promised me. Thank you Mr. President for letting me know that the ADA does not apply to you because you are a private college. Thank you for making my senior year, the one that is supposed to be amazing, miserable.
Everyday in America people get offended over the smallest things and you have to be careful of what you say. In the chronic illness community people get really offended when people say “but you don’t look sick”. Have I had this statement said to me? Yes, yes I have. The truth is I never got annoyed by this statement. In fact I say, thank you! Here are some reasons why I believe in my OWN PERSONAL OPINION. The chronic illness community should not be offended by this statement.
- We really DON’T look sick!- That is the thing, we have an invisible illness! People don’t know what we go through everyday. I know for me one of the hardest parts of my day is taking a shower, because it takes so much out of me. Unless I am having a POTS attack or a seizure I really don’t look sick. These people don’t live with us, how are they supposed to know what we go through evedryday? Does the person in Walmart next to me know I take my heart rate five times a day and keep my blood pressure cuff on hand? They don’t know because they don’t know me.
- People are naive- Some people truly don’t understand a chronic illness. I for one never truly understood what a chronic illness was until I was diagnosed with one. Again, some people may not know someone with a chronic illness. Why should we be mad at people for something they don’t understand? Should I be mad at you if I took you to a different country and you did not understand the culture or the language? No, of course not! You have never been there before!
- Don’t we not want to look sick?- I know for one I don’t want it show. Sure, there are a lot of days I get epileptic headaches and my heart can be a bit tacky. People with chronic illnesses fight to have the same rights as everyone else and to be able to do what everyone else can do. Do we want it to show? Do we want someone to pull us out of line at the grocery store and say,”hey, you look sick”! I take it as a compliment. When someone says that to me I feel like I am on top of the world because I look like everyone else!
- Other people have battles that are not just chronic illnesses- People fight invisible battles all the time. Ones we don’t even see. Maybe a parent or friend just died. Maybe someone is living in poverty or perhaps lost their job. Everyone has a battle they go through everyday. Those people don’t have a catchy phrase that gets them annoyed if it is said. Everyone has an invisible battle and we all carry our own baggage.
Again, this is my personal opinion on the matter. It does not make it right or wrong. The phrase does not bother me but I know it bothers hundreds of others. Some people want others to know the daily struggles they go through. However, if you really and truly are offended by this statement, take a breath and remember we call it an invisible illness for a reason.
Its been one year since I have been diagnosed with POTS and Epilepsy. Now that it has been(mostly) figured out, people have started treating me the same as they did before I got sick. I am able to do things like ride my horse, drive a car, and the normal everyday activities everyone takes for granted. When I first got diagnosed my doctor said I was in for a wild ride. Boy, was she right! I had no idea that a chronic illness could affect me, I was always healthy other than the occasional cold. I have had many people ask me some questions since I have been ill. I am hoping to be able to help answer them.
- Are you OK? -This is the most common question. When I first got sick I would lie and say I was fine. I try not to do that now. The reason is people actually won’t believe you when you are fine and will continue to worry. So for your sake and for theirs tell the truth.
- What does a seizure feel like? – The best way to describe my seizures is like this. Have you ever seen toy story 3? When all the toddlers are playing with the toys in the daycare center. The toys are able to feel but have absolutely no control what happens to their body? Imagine being the toy. I feel like a rag doll being constantly pushed around. It is extremely painful. People will hold you down so you don’t run into stuff but that only hurts worse. You wonder why your mouth is aching only to find out later that you are biting your tongue. You look down to find out horrified that you wet your pants because you lost control of your bladder. Everything is dark and you can hear voices off in the distance of your friends making a game plan. Then you open your eyes, are limp for a few seconds. You try to talk but the words come out in a stutter. You try to move your body but it is very weak. In about ten to twenty minutes you are slowly able to get your body back unless another seizure decides to come along.
- Are you scared even though you have seizures before? – Yes, always. I know how to handle them. FIND A LARGE PLACE! Bite down on a sock, have a pair of spare pants on hand, and find your favorite soundtrack. They are very scary, however for me they are not dangerous. Sometimes I even have seizures in my sleep but don’t realize it. The only reason I found out about those was because I took a nap in the backseat of a car.
- Do you want people with you when you are feeling sick? -Depends on the situation if I am having the everyday normal POTS attack I prefer to be left alone. However, if it is an epileptic seizure the truth is I like to have someone with me. Only because I have ended up banging myself against the wall. One time I broke a picture and had a seizure in broken glass. That was a really bad day!
- Are your medications/doctors expensive and are they really necessary?-I had a friend ask me that. I was a bit annoyed at the question. I tried to cut her some slack because she has never seen me have a seizure or POTS attack before. I just politely reminded her that it is very necessary (and yes can get expensive but hey that what insurance is for)!
- How do you keep such a positive attitude ALL the time? -Honey, glad it looks that way because I don’t! There are some days I can be a complete jerk when I am feeling sick. I got really sick in the summer and ended up in a wheelchair for almost a week. Everyone said I had such a bright and positive attitude. However, those were the people who did not spend hours with me during the day. I had a really bad attitude around the people trying to help me, when I should have been being positive around them, not the people who saw me from a distance.
- YOU HAVE EPILEPSY, O MY GOSH! If I flash this light will it give you a seizure?-Nope, tried that. If I am off my Kepra it sure as heck will. However a lot of people with epilepsy don’t have that problem. Don’t let the movies fool you!
- How can you drive? -By starting the car, apply gas, putting on the brakes…. This one makes me laugh. I know when a seizure or POTS attack are coming they are very rarely random. That is why I can drive a car.
- Has this shattered your faith in God. -I would be lying if I said it did not. I did not want anything to do with Him when I first got sick. It took a lot of prayers with friends to get me with the relationship I have with Him today. In fact I believe my faith is stronger now.
- Well looks like that about covers it! I am very blessed and happy with where I am now. I have some bad days but the good defiantly outweigh the bad. It’s hard for me to remember my last seizure. I am just a young, very spirited, and very stubborn cowgirl with a lot of stories to share. If you have a chronic illness it will get better I promise! Just give it time, take your meds, and find the good things about the day!
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