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Teenagers
with Chronic Illnesses A website for teens and young adults with chronic illnesses |
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About
our Illnesses Announcements
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We
Aren't Faking It
If I had an illness that is well know, like Cancer, or AIDS, or something that the general public is knowledgeable about, then I wouldn't have to explain my illnesses over and over again to people who will never understand. I find myself trying to make comparisons to other things so that what i have is better understood. One thing that I say a lot is that if I had like no feet, or if I broke my leg, or something that was actually visible, then people would be able to look at me and say, "Oh I see, she cant walk, because of such and such..." But because all of my illnesses are INVISIBLE, people just don't get it. Whenever I go out, or I'm able to go to school, I spend a lot of time MAKING myself look HEALTHY. I put makeup on so my face doesn't look so pale, and other things. So when people see me, they are like, "Wow you look great!" and that's nice and stuff, but with others, I can just see them looking at me and thinking, "She looks healthy and fine, so how can she say she's sick?" What they don't understand is that if i wore no make-up and was vocal about how I feel every second, they would get it. When people say, "how are you?" I find myself automatically saying "I'm fine," how are you? I mean that's a normal response. "How are you" is a conversation starter, people don't really want to know your whole life story, you know? But my mom kept telling me that I really need to tell people how I am truthfully feeling, or they wouldn't get it. So now I TRY to do that, but I really don't want people to worry about me or feel sorry for me, so it's hard.. I cant even remember the amount of people who have made little comments about me being sick, and maybe they don't mean to infer something, but almost all of them come down to the statement that is: you aren't sick, you are faking it, you just don't want to come to school. Some examples:
Let me explain the
answers to these questions, so I can set the record straight. 2. Oh please! I am missing so much! I am missing my entire teenage years!!!!!!! 3. Yes sometimes that is true-but many times, the reason I wake up that late, is because I am up all night long in terrible pain, or just feeling sick! you all might wake up at AM for school, but i bet you aren't up all night feeling horrible and not getting any sleep either. 4. I literally have spent the last 2 years of my life cooped up at home. If I have a day where I am feeling not too bad, then yes I will go to the mall and maybe to one store for at most-an hour. Understand that a girl has got to get out of the house sometime, and that going to the mall for an hour out of 2 years is pretty important, for me to keep my sanity! 5. Sitting in class, concentrating is ENTIRELY different then sitting on my couch in my PJ's just watching a movie for 2 hours. Yes im sick. Yes I cant go to school right now. But does that mean I should never do anything? Does that mean that i should stay in my house all caged up for the rest of my life? no. There are so many other annoying questions that I am asked. Don't get me wrong, I don't mind if someone asks me about my illness and are genuinely concerned and want to know facts and information, but those questions up there, are just not necessary. If you have examples of questions that you are asked that you can't stand, email them to me and I will put them all on this page! thanks! Also, because of my NMH, I get tired VERY easily, this is made worse by the fact that I was bed ridden for about a year, and I still haven't been getting the exercise that I used to for 2 years. So any activity just wears me out. So, because of a suggestion by a doctor, we got a handicap sign thingy. Now, I am so against this because I feel weird, and also because I don't want to take up spots for people who are really in wheelchairs or something. But, to tell you the truth, the handicap parking has helped me tremendously. I am able to do more because I don't have to walk as far. A lot of people see me getting out of the handicap spot, and they shoot me a funny look. The kind of look that says, "Oh, come on, your healthy and normal, your probably using your paralyzed grandma's sign to get a good parking spot. EVERYONE, please know that that's not what im doing. If u knew me, you'd know I'm not like that. Just because u cant see a persons pain, doesn't mean it isn't there, so don't look at me funny when I use that parking! Plus, I don't use it all the time, if there is a normal spot that is close enough to where I need to get to, I ALWAYS make my mom park in the normal spot, so others can use the handicap one. Thanks for listening everyone, sometimes I just need to vent about things! Remember, I'm not dead, I'm just on homebound! Conclusion: So, if people see me walking around the mall, or out with someone, don't think that im faking my illness, im not. Instead, be happy for me, be thankful that I am getting out of the house for an hour and living a life. Other annoying questions, posted by other teens: * "If you are so sick, why do you even come to school at all?"----posted by Ashley * "You are so lucky!!! I can't believe you get to stay home all day and do absolutely nothing?!?!"---- Posted by Mindy...(That the question (statement) I wish people would stop saying!! I'm doing "nothing" because most of the time I can barley move my head and when I can I normally wear out with in a few min. of doing something!!!) * "What do you have now, cancer? AIDS? Menengitis?" -- Alejandra * "Your boyfriend can't come over if you stay home from school. If you're too sick to go to school, then you're too sick to have visitors." -- Alejandra If you want your comment about not faking it to be displayed, please click the 'contact me' link on the left bar to email me. "Nothing in the world is more dangerous than sincere ignorance and consciencious stupidity." -Martin Luther King, Jr. "Assumptions
allow the best in life to pass you by." -John Sales |