Life is a struggle. Every moment, whether you know it or not, is a fight for survival. It’s a long winding road that seemingly has no end. Sometimes it’s easier than others…Sometimes it’s much harder. My life generally feels like the latter. It’s difficult to describe my disease. Most doctors and experts have trouble understanding it. That is, the doctors who believe this condition actually exist. Most physicians dismiss patients who have this particular illness as crazies, or at best, people who are in need of mental care. I’m sure they believe that most people who claim to be sick are hypochondriacs, lazy, or are people desperately seeking attention. I’m sure in some cases this might be true, but on behalf of all the patients who actually are sick, I can tell you this is usually a horrendous falsehood. I am twenty-‐one years old. I have wonderful parents and a great home life. I graduated high school as one of the top ten students. I love talking to new people and learning new things. I’m interested in politics, different religions, and different cultures. I neither shy away from society, nor go looking for excessive attention. I consider myself reasonably smart, attractive, and can carry a conversation with most anyone. I am extremely interested in the world around me and I would love to travel and go to college …yet I spend most of my time resting and staying in. The reason I’m explaining this is to prove the point that I am not a manic depressive, who is satisfied living off of my parents and my SSI. I’m someone who is extremely ambitious and wants the most out of life. This disease is not a choice I made, or something I created to get out of growing up and taking on responsibilities. This is something that happened to me and I have to live with it every day. At age twenty-‐one, sometimes I feel like I have more in common with my grandparents than my peers. I have difficulty sleeping, I’m usually sore, my joints sometimes feel like the marrow has worn away and my bones are scraping against each other, my head constantly hurts, I’m sensitive to light, sound, and particular smells, and I tire in doing the simplest tasks. I always feel worn out and tired. Sometime I feel like I’m a twenty-‐one year old woman stuck in a body that feels eighty. Living in chronic pain makes you understand that there are different types of pain. In my case, I usually feel an all around ache. It’s everywhere and nowhere at the same time. When you prick yourself with a pin, or accidently cut yourself, you feel a very specific kind of pain. You can point to the place on your body where it hurts and can tell exactly what you are feeling. That is not the case with CFS. For me it’s like a constant white noise. I always feel a sensation of discomfort. You feel it in every movement and every cell. There is no relief or break. I honestly can’t remember what it feels like to be healthy and normal. Perhaps one of the more confusing things about this disease is as horrible as you feel, you look perfectly normal. This facet of the illness can be a double edged sword. At first glance, no one can see you are sick, and from personal experience, I know this can be both a good and a bad thing.
I’ll admit I’m still relatively young and vain. When I go out into the world, the last thing I want is for people to look at me like I’m ill or different. I just want to feel normal like everyone else. So typically I just don’t mention it at all. People never know I’m sick and never treat me differently because of it. The problem is I am sick and I do feel differently. I cannot do the same things other people my age do, simply because I don’t have the energy. This is something that my peers don’t, and could never, understand. It’s a very painful disease, made even more painful when you realize all the things you are missing. I’m supposed to be in the prime of my life and most of the time I feel like I’m merely existing, rather than living. It’s hard to explain: Even harder to comprehend when you don’t have the actual illness. It’s not a disease that’s instantly recognizable like cancer; nor will it kill you (though sometimes it feels like it will.) But it will make you suffer. There is no easy way out. No treatment, no cure. As morbid as it sounds, at least with a terminal disease you know there is an end in sight. Either you get better, or you die. Often times I think that would be easier to deal with than this sickness. If I had the choice of living a hundred more years with this illness, or only five without it, I would definitely choose the five. I want to make it clear now: I am not a depressive. I have never been suicidal. I have a pretty cynical sense of humor, but I enjoy life and being with the people I love. All things considered, I feel like I have a pretty good grip on reality and I laugh far more than I cry. Have I ever been depressed? Of course I have, just like everyone else, but there is a big difference being occasionally sad/ depressed and having depression. One is an adjective that changes with your mood, while the other is a state of being. It’s a fine line; but a huge difference. I have two wonderful parents that have never let me down, and a loving family that makes life worth living. That is why I am here today, because of them and their support. I have never fallen into the deep hole of depression because I’ve always had someone to hold and comfort me. But I cannot imagine the pain and suffering of having this disease and dealing with it alone. Having doctors and physicians constantly tell you that you need to see a therapist is a horrible experience. That, more than anything, does make you feel crazy. It does make you feel depressed. It’s impossible for a normal, healthy person to understand what it means to be desperately sick and needing treatment, and getting absolutely no help. So my plea is for those other unfortunate individuals with CFS, as well as myself, for someone to come to our aid. I hope someday people can understand the pain and suffering that we go through, and try to treat us. This is a disease, and we deserve to find a cure. As lonely and painful as it might seem sometimes, I know I’m not alone in thinking this.