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Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities
Listen to Our Stories: Words, Pictures, and Songs by Young People with Disabilities



What Does Being Sick Look like, Anyways??

Rebecca [last name withheld]

Rebecca first wrote to me when she was eighteen and had had chronic fatigue immune dysfunction syndrome (CFIDS) for six years. What follows below is compiled from the letters she wrote to me during the first few months of what turned out to be a lasting friendship.

From the start, Rebecca’s letters brimmed with enthusiasm and generosity. “I’d love to help you,” she wrote in her first letter. “Please write and ask me anything. I will answer ANYTHING!” By the second time she wrote, she was saying, “I’d like to get to know you and be friends,” and by the third time, she was asking after my welfare and closing her letter with “love.”

I’ve been sick since I was 12. I got sick with viral pneumonia to begin with. After the pneumonia, I continued to have chest pain, a fever and felt very weak. Like I had the worst flu ever. Then pelvic pain set in and just wouldn’t let up. My blood tests showed something was wrong, and at first the doctor was very concerned. She sent us to a gastrologist who sent me to a gynecologist who looked at me and said I was totally crazy and just needed a boyfriend (this is very mildly put compared to what he said), and then we just kept seeing doctor after doctor until I’d seen over 20: pediatricians, surgeons, a neurologist, a rheumatologist, general practitioners, a psychologist, more gynecologists, etc. I had sooo many tests! I had CAT scans, MRIs, x-rays, blood tests, bone scans, sonograms, laparoscopic surgery, everything!

After the first few months, our regular doctor didn’t try to help me anymore. She didn’t want anything to do with it. My world was just spinning, I don’t know how to explain how awful I felt! I wanted to die so much a lot of times. It was all I could do not to break down in the doctor’s office, but I fell apart as soon as we got out the door. I’d cry for a long time because they wouldn’t believe me, and I wanted so desperately for them to help me! They made me question myself. They also made me hate myself. I often thought it was all my fault. The doctors kept blaming me. Saying it was all in my head. That I just didn’t want to go to school. And all these people (from school, church, and other places) would say I was making it up or it wasn’t that bad. I didn’t exercise enough, I didn’t try hard enough, the list goes on. I began to wonder (and sometimes I still do), “Was I bad? Did I do something wrong? Do I deserve this?” My mom kept telling me I didn’t and it wasn’t my fault.

Sometimes I just feel so trapped in my body, which hurts so bad and is so weak. I wish I didn’t have to feel this awful pain anymore. A lot of times even the slightest movement makes it worse. Now I am so sensitive, it hurts to be touched, like when someone brushes by! Hugs can even be painful. In a way, CFIDS leaves you fighting for your life. You have to fight so hard just to do tiny things that most people take for granted, like getting up in the morning. Washing my hair, getting dressed, even tying my shoes hurts (the pain gets worse when I bend over or move and so on). I can’t wear jeans anymore. Most clothes hurt. I have to wear really loose, light clothes.

Next to all the pain of this disease, people not believing me really bothers me!!! I could write a lot about the disbelief I get. It’s hard enough to live with a long-term illness, it’s even harder when a lot of people can’t see it and don’t believe that you are REALLY SICK!! CFIDS is a very real and serious disease. It is NOT just being tired. I wish it were!! People know so little about being sick/having a disability. They don’t understand nor do they care. They seem to enjoy telling you, you did something to deserve it.

This is just one example: I had a lady calling me after an article I wrote about CFIDS came out in our local paper. A perfect stranger and she’s telling me it’s all my fault and if I had faith in God this wouldn’t have happened, I wouldn’t be sick. Since I was sick, she thought I didn’t have enough faith. I do have faith in God, which is what has kept me going. I just know that no matter what, God will never leave you and He’ll always help you through. Even if I don’t get better. Just because the answer to your prayers isn’t what you asked for doesn’t mean it’s not an answer.

I’ve lost all my friends because no one (at least not most people) wants to hang around someone sick. They just don’t want anything to do with me, and some think I’m crazy and making it up. I am always hearing, “Well you LOOK fine!!” Like I’m pretending! I may look fine but what they don’t understand is that I feel AWFUL!!! What does being sick look like, anyways??

This can be as hard on families as it is on the person who is sick. Besides my mom and dad, I have two sisters, Cathy (15) and Pam (12). I know it’s really hard on them, even though they are good about it. My mom and I are very close. She has stuck by me all the time. She never even listened to the doctors when they said there was nothing wrong. She’s never given up on me or let me give up on myself. There were so many times (and still are) when I wanted to.

My mom has been home schooling me since 8th grade. When I was in school, I could barely make it through the day. I was pushing all I could, and it was making me worse and worse. The school wouldn’t help at all. The school nurse called my mom a lot and said I just didn’t want to go to school. She would never let me go home when I needed to, even when my teachers thought I was too sick to stay. She called the doctors, too, and told them she thought I was crazy. She would refuse my gym notes from the doctors as well. The school gave us a hard time for about a year — from the time I got sick until the day my mom pulled me out. They just kept threatening us! At the end, they said if I missed any more days they would turn it over to the court. As it was, I was going to school more than I could bear.

Although I very much wish to be in school, to have a normal life, it has been a miracle that my mom has been able to teach me at home. It took a lot of stress off me. I don’t have to worry about missing school and having them give us a hard time. I can work at my own pace. I study whenever I feel up to it. It doesn’t have to be a certain time of day, and I just do a little at a time. Also, I can focus on something I like, like reading and writing letters, where before it took all I had just to get to school.

I’ve gotten worse over the past six years, so now I could never handle school. It’s really hard to know that, because this would have been the year that I graduate, and I wanted so much to go to college. I wanted to be a nursery school teacher. I hope someday I can. I hope someday they can do more to help people who have CFIDS.

It’s very difficult to know that I can’t live like most kids. I feel especially down around my birthdays. I don’t know if I’ll ever get better, and birthdays make me feel like my life is going by without me. All these years are supposed to be important. At 16 you are supposed to learn to drive. At 17, 18, 19, 20 . . . those years are supposed to be important, too. Proms, college, all of that. Not only is it difficult for me to know that I can’t do those things, but also people expect that of me. I think the worst part is, I feel stuck at 12, even though I’m actually growing up. I’m 18, but part of me missed all those years. I don’t want to grow up sick!!

What is a normal day like? Well, mostly I rest. I can’t do much. I get out of bed, get dressed, rest, use the computer, rest, rest, rest, listen to music or read or study, rest, rest, rest. It’s not all gloomy. I don’t mean to make it sound that way. It’s just that I want you to know it isn’t something someone chooses and it isn’t fun. But there’s joy! There has to be! I can still laugh (except that it usually hurts) and smile. You have to! You learn how to find joy in little things, which actually aren’t so little anymore. We have a dog, Callie, and a cat, Mannie, and they are fun to watch. I LOVE to write to people. I have lots of pen pals through the mail. Also on the computer. I have many pen pals that are my age and have CFIDS. I’ve also gotten to talk to adults who are sick. I’ve adopted a big brother, aunts, uncles. . . . This has truly been an answer to my prayers. It’s my lifeline. The first two years, when we didn’t know what was wrong, I felt like no one went through this, that I was alone. Although finding out I had CFIDS wasn’t good, it has helped very much to know I’m not alone! When I started writing to other kids who went through and are going through the same thing, it was wonderful! Then I found a support group on the computer, and that has been great!

I’m not very comfortable talking about being sick. But people don’t understand what CFIDS is, which is why I want to tell about it. I feel so angry and hurt that people don’t take this disease seriously, and it helps to try and make people aware of it. If one person learns something — if only it helps them to realize they do have a real disease and they aren’t crazy — it will have made talking about being sick worthwhile.

For more information about the disabilities discussed in this story, please visit the Resource Links page.




spacerLinda Hillyer, compiler and editor of Listen to Our Stories
logo art by Adiyana Paramita
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