Surviving one of the rarest diseases, and how it became the most important thing I learned this year.


The TallTale Writer, Editor

Everyone knows that we all have some school years that are tougher than others. Some school years we have tough trials to face from the outside world and often need help. But what if the problem is your body attacking itself? What if the illness is so rare that no one knows how to heal it, and you’re just stuck with the label, “untreatable”? That’s what I was stuck with for years, and no one knew.


A lot of illnesses show whether its affecting a person physically, and sometimes it doesn’t. The dangers of having a rare illness is how hard it is to live with it since there are no known cures. But know that just because the illness can’t be seen, doesn’t mean it can’t kill you. If you’re are a terminally ill person, you understand the constant bombardment of comments like, “But you look so healthy!” when you tell them about your illness. Another common one is the, “But you don’t look like you’re in pain.” comment that comes after trying to describe why you need extra time or help with something.


Although easy to shrug off, these comments become detrimental overtime. Sure, most don’t mean to cause harm by these comments, but it becomes taxing as you begin to feel that nobody understands your struggle. Trying to get school work done becomes hard as you are constantly coming in and out of doctors offices and being put in the hospital. Even worse is trying to act like everything is normal, when we all know that isn’t true. Depending on the illness you have, doing anything becomes a chore. For me, my pains became so bad at one point, I couldn’t even type or hold up a pencil. Everything I loved to do got taken away, and that in itself is painful for any kid to go through. I had no choice since my body didn’t want to comply. No more sports, acting or even hanging out with friends. Everything became tough.


So, what if you’re a student dealing with life threatening or painful health issues? Here’s a list of ways I was able to survive the high school years.


1)Let the school know!


This is one of the most important things to do. As soon as you get diagnosed, or in the process, let your school know. They should be able to get you the help you need in order to make school less of a painful experience. Giving them a health reason can also help prevent confusion if something like your grades or attendance become alarming. This way your school has a viable reason behind your habits and behavior. Trust me, it saves a lot of trouble. Do not wait till the last minute to let the school know.


My experience: When I first got this illness, I went a full year without telling the school. It was one of the most painful experiences I had to face. Not only did I not know what was wrong with me, but a lot of problems with grades and attendance started to happen. I started to tell teachers what was wrong with me, but how was I supposed to tell them that I’m constantly sick all day and everyday? Some teachers took my explanation with grace, most did not.  The school started to become concerned with my attendance as it did become suspicious. I spent a lot of days at the doctors or at home not wanting to go to school due to being in immense pain.


Eventually my explanation was not enough for the school. They wanted my parents to come in and explain to them what was happening to me. They did, and brought evidence of my doctors appointments. The school was not satisfied and it led to a lot of confusion and fights. They could not see my reason for absences even with doctors notes and phone calls. The reason being that this rare illness wasn’t diagnosed at the time, and didn’t seem to be “that serious”.


2) Let your teachers know.


Of course another obvious one! And sometimes the hardest one to do. Some people are willing to be upfront about their illness, while some people prefer others not to know. It depends on what you’re comfortable with, but if you know that your illness is debilitating and can affect your grades, then it’s best to let them know. I know everything said here is easier said than done, and I can explain to you why some kids don’t want teachers knowing their health issues. The first problem is of course confidentiality. Not everybody trusts another person to keep their health problem a secret, sometimes shame and humiliation comes with the illness you deal with. Second, is the feeling that teachers won’t believe you and think that you’re faking it. This is especially true if you battle with an invisible illness.


My experience:

I had many great teachers that understood, and of course some that didn’t. Even though it sounds basic, sometimes if you are seriously ill or not feeling well, you need an extension on some of your assignments. I remember having a tough time one month. I had crises pains that landed me in the hospital often and required me to go every other day for shots to stop the pain. The only problem was I never told the teacher, I thought I could handle all the assignments given to me, but it became clear I couldn’t handle it. I asked him for a few more days extension, he was kind enough to say “ok”, but he was clearly mad because he had given me a month. If only he knew what I was going through that month. The amount of time I spent around doctors and in constant agony could never be described, but maybe if I told him, he would’ve understood.


3)  Understand you are not alone


If you deal with an illness of any kind, know you are not alone. There is always a person who will understand, out of a sea of many who wouldn’t. School can be very difficult to go through when you’re in constant pain. But know that you are stronger than any illness, and that you can survive whatever comes your way.