In her own words: living with chronic fatigue syndrome
As told to Amy Scholten, MPH
Alicia is a 54-year-old mother of two who lives in New York. Having lived with crippling chronic fatigue syndrome for 10 years, she has learned how to get through each day—although some are much harder than others.
What was your first sign that something was wrong? What symptoms did you experience?
In 1990, I was all set to accept a new position in research, hoping it would help to finance my children's college education. Instead, I ended up totally disabled.
The onset of my troubles was violent. A virus attacked my bronchial area and it was swollen shut, making it extremely difficult to breathe. I was under the care of a lung specialist for six weeks. I had a bronchioscopy, and they looked for tumors. The virus left me with asthma, a condition that I still have today. Eventually my breathing got better, but I felt that the life was drained out of me.
Aside from tremendous fatigue, I have blurred vision, dizziness, pain (in my connective tissue, not my joints)—mostly in my breast bone and hips. I experienced pressure headaches, orthostatic intolerance (I can't bend over or I feel like I'm going to pass out), low blood volume, irritable bowel syndrome, and loss of short-term memory. I often know what I want to say but I can't think of the word. I have other symptoms too.
What was the diagnosis experience like?
On the day that I was scheduled to start my new job, I literally couldn't get my head off of the pillow in the morning. I went to a medical clinic and saw a young female doctor who said "I think you're depressed." She didn't even know me! But shortly thereafter, depression was ruled out.
Six months lapsed before I had a definitive diagnosis. I went through all kinds of tests. They checked me for cancer, multiple sclerosis (MS), all types of ominous illnesses—even AIDS. And all I got back were negative results from all the tests. Then my cousin went to Toronto and found a magazine article on chronic fatigue syndrome and told me about it. I met all the criteria, but it was a very subjective diagnosis.
My husband went with me to my doctor and told him "This woman is very, very ill," and the doctor seemed more willing to listen to me after hearing my husband's testimony. Then I had to deal with trying to get disability. The organization I was dealing with said to me "Your word means nothing. We'll only listen to a doctor."
What was your initial and then longer-term reaction to the diagnosis?
Well, I wanted to know the truth and find a way to get through it. Being an extremely active person, it was very hard for me to make adjustments. I went through a grieving process. Initially, there was denial—I kept telling myself "This isn't going to stop me." But when you do that, you fall on your face. I went through a period of anger. Then finally acceptance—that's when you start to live more successfully, but as a disabled person. It's very painful. You want to be a productive person, but it's hard.
One of the hardest things for me emotionally is that I don't think that most doctors—or health care institutions know the truth about this disease. Another difficult thing is that I've lost friends because of this disease. They don't understand. They say to me "Well, I get tired too, but..." My prayer is that one day people will really understand this illness.
How do you manage your disease?
Mostly by listening to my body. When I am feeling ill or tired, I have to take it easy. The disease will only let you do so much before it knocks you out.
Did you have to make any lifestyle or dietary changes in response to CFS?
I have to watch overexertion—even something like walking into a grocery store and trying to do the aisles. It goes beyond what my energy will allow. I'm also like a barometer. I have an especially hard time when it's cold outside, when it's rainy or humid. But the disease runs me, really. I can't do a lot to worsen my condition because it just exhausts me and prevents me from overdoing. Whatever the disease chooses to do to you, it can run your life. It's very frustrating. You save up all your energy to go to a wedding but your body may not cooperate.
I also take vitamins. But many people with this disease are preyed upon by quacks. I feel that you need to know what's going on in your body first. I think it's dangerous to randomly treat this. Some people are so desperate that they spend a fortune on all kinds of "treatments." I believe in getting blood tests and treating aspects of the disease that need to be treated.
Did you seek any type of emotional support?
Well, I'm not into organized religion really, but I do have faith in God. I believe that things will ultimately be okay. When I initially became ill, I asked the doctor for a referral to a counselor. My children were 10 and 13 at the time, and I thought we'd have a lot of adjustments. I wanted something that would help everyone in the family. But we did have a bad experience with the psychologist who made a really insensitive comment to me once about how lucky I was to have my family and that without them I'd be living alone and on welfare. I was ready to fire her after that, but she sent a very sincere letter of apology, stating that she had no right to say that. After that, we saw her as needed and she gave us some coping tools. But I'm luckiest because I have such a loving family.
Does CFS have any impact on your family?
Definitely. It puts quite a burden on the healthy spouse. If I take my daughter shopping, I need to stop and rest all the time. At most I can go to one store, but I can't walk through the whole mall. I need to save up my energy. Usually, I sit and wait for my daughter to shop. I can't go to the grocery store anymore. My family helps out. But many people with this disease who don't have families have to go to a nursing home. It's heartbreaking.
What advice would you give to anyone living with CFS?
First, go to a doctor who knows about the disease and will do the appropriate diagnosis. Unfortunately, I don't think most doctors really understand this disease. Also, listen to your body. You know when you're ill. Write down your symptoms and try to find a knowledgeable doctor.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
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