|The most important thing about
me is that I'm human like everyone else with faults, good and bad days,
friends, hobbies, family, and other things that "normal" kids have.
My name is Stephanie and I'm a 19 year old who loves life. I'm a native Southern Californian, and I've never been in the snow longer than three days. I was diagnosed with anklyosing spondylitis (AS), a form of spinal arthritis, in October 1994. Since that time, I've been told that I had over 15 different chronic illnesses and the list is growing, yet I'm still ticking. My friends like to compare with me with the Energizer bunny because of how long I was able to last before running down in the last year or so.
Here's what happens. Almost all my joints from my toes to my jaw swell up and become red; I lose coordination; my muscles shrivel up and get very weak since I can't use them most of the time; they hurt and are very stiff, too. In addition, I have eye problems, digestive problems, nausea, joint stiffness, light-headedness, migraines, some speech problems from medicine I need to take, mood swings...and many more, but if I don't stop now, I'll be here typing this all night.
For those who don't believe that I have an "invisible" illness, I make it my point to educate them. I have found that education is the key to understanding and compassion. One more person I educate, one more person who will not discriminate.
When I was first diagnosed, I would become angry towards people who didn't believe me. Luckily, I changed because, in a sense, they had every reason to doubt me. See, I used to be active in sports and it's hard for people who knew me then to believe that someone went from athlete to "disabled" in a day. On top of that, they couldn't "see" anything wrong with me. I look almost completely normal. Ignorance is the problem I face most often. I only get angry now if I have explained my problems and I still have a hard time because noone can see any "physical" problems.
In between doctor appointments, therapy, and school, I like to write, read, draw, listen to music, watch my two younger brothers grow up, play video games, and chat. People find me easy to talk with once they get to know me, but I tend to be quite shy at the beginning. I may seem serious, but that hides a comedic interior that I like to share with friends and family. I can't do that when I have bad days-days when I'm "flaring" or when I relapse. My good friends know that during this time I'm not really myself. They have been good enough to take quite a verbal beating and withstand what we call "the look," and still talk to me after it's all done and over with. "The look" is what I guess other people call the "death stare."
For me, school life has changed over the years quite dramatically. I was very athletic until junior high school, when I injured my knees playing volleyball (that's when the AS started to really show up). I was diagnosed as a teenager in high school...very difficult to take. It took me two years to come to terms with everything, and I'm still trying to deal with all the changes that I had to make in my life and school. I was told to tell each and every teacher of the "invisible disease" that I had. Because I look perfectly normal, they were skeptical. The disbelief that the teachers had in me hurt me a lot. Even more than my when my friends were just ignoring the fact that I started to withdraw from them.
I had to get a second set of books because I couldn't carry the ones I had to and from the lockers. My backpack was on a carrier. I quit volleyball and was put into adaptive physical education. Once I was in the adaptive p.e. class I found that it wasn't adaptive at all. It was made for the kids who had managed to get notes from their doctors to excuse them from p.e. Once I even had the humiliation of being put into study hall where I was watched by a security guard who growled at everyone...it was really a place for detention, fighting, or truancies. Kids thought I was a "criminal" because I was in a closed classroom in the back of the school for an hour each day.
The entire staff in the administration building knew me because I was constantly getting taken out of class for doctors appointments. And half of those didn't like me for that particular reason. My guidance counselor despised me because I was always coming into her office trying to clear an unverified absence or to ask why some paperwork hasn't gone through yet. However, by the time I was a senior all this became an everyday occurrence, so it didn't bother me as much.
Now I'm attending a university and it's gone from bad to worse. Because it's private, the university doesn't have to follow the American Disabilities Act (ADA) as closely as most other schools. They only have three buildings with elevators, and of course I have only one class in any of them. I've gotten eaten by these elevators, too, because I can't pull my handcart through fast enough. Which is better than the alternative... climbing a mountain of stairs without my handcart (I can't drag it up the three flights). Needless to say, maneuvering myself around campus has become quite a problem. When I have flareups (the last two Fall semesters), my ability to walk is almost zilch. In fact, I wasn't even able to attend class. Most of my professors have been compassionate towards me once they understand why I wasn't always in class. Other students dislike my parking in the handicapped spot when I look "normal." Especially since we have a serious parking problem, they think I am using the system illegally. I just ignore the looks and go on my way. But it hurts.
The university hasn't influenced me in a positive way when it comes to disability rights. People in wheelchairs can't use the NEW library because the elevator is too small for even the smallest of chairs to fit in. The doors on campus are practically impossible to open without the help of someone. The restrooms may say handicap accessible, but really they're not. I know a guy in a wheelchair that couldn't go to class because a student group decided to put tape all over the building his classes are in, so he just had to turn around and go back to his room which is on the farthest end of the campus. Thank goodness his chair is electric. In my class there are quite a few of us that have serious health problems that need accommodations. I hope to get together with them and make some changes before we leave here. I've learned to be an advocate for myself, despite the fact that it takes so much energy.
I'm a peace studies major and I hope to mediate in the area of medicine when I graduate. Currently, I'm writing a book about Fibromyalgia Syndrome, another one of my diagnoses.
I have some great friends on and off campus. The people closest to me are "friends" and people that I know and talk to if they are there are "acquaintances." My friends are absolutely wonderful. They know that when I'm having a hard time that I'm really not myself. Despite how long I've known them , I still feel bad venting to them. I know I have a complicated situation that a lot of people don't understand. Why, even my doctors are baffled by my case.
My friends reassure me that it's okay to vent and they tell me that they want to hear because they care. That has been one of my greatest sources of support over the years. I never valued friendship as much as I do now.
Thanks for visiting my page,
Joan Fleitas, Ed.D., R.N.
Last updated: November 15, 2004