When did you last see an interview of someone who has chronic fatigue syndrome? You probably didn't, unless you were reading about Laura Hillenbrand, the author of Seabiscuit. Hillenbrand was confined to her room for years and the result was a praised and prized novel. But most people suffering from CFS don't have that book to show others. They may spend years or decades homebound and the world conveniently forgets about them. There is no glamour about CFS. Someone just takes over your life and hits the pause button without asking you.
Jat is 20 years old and lives with his family in a suburban area near Toronto, Canada. It has been over a decade since his life was abruptly put on hold. "I got sick in March of 1993, just after we had the bathroom painted. Within a few days my mother, brother and I all became mysteriously ill. At first we assumed it was something that would pass, such as a nasty flu."
But the malady didn't go away. After a while two of them were told they had mononucleosis, which is something patients commonly hear. For some time CFS was even thought to be a form of chronic mononucleosis. Later mono was ruled out and all of the three family members were diagnosed with chronic fatigue syndrome. Jat was just seven at the time and hardly remembers anything about it, but the illness led to major changes in his life.
"At first I continued to attend school as though nothing was wrong. But this didn't last very long, and I quickly began missing more and more days. My grades fell, my social life suffered, and I ended up spending most of my time in bed. This trend continued until I eventually couldn't keep up with school at all and had to stop entirely."
So you haven't been in school since? How does that feel? "I missed a large chunk of my teenage life as a result", Jat says blandly. A large chunk of his teenage life sounds like an underestimation. "I grew up with very few or no friends, and never did any of the things a normal teenager does. After I stopped going to school I was technically being homeschooled, but that didn't go very far."
Fatigue and exhaustion
What is CFS really like? What kind of symptoms could be so bad that a small child would have to quit school? Jat tries to explain. "The most prominent symptoms are the fatigue and sleeping issues. While the fatigue can remain fairly light if I stay rested, I'm often hit by an inexplible exhaustion. This exhaustion not only prevents me from doing physical activities, but also impacts my focus to the point that even reading becomes difficult. I also occasionally get pains in my muscles and joints which can make even the simplest physical activities painful."
The concept of fatigue in CFS is tricky to explain to someone who hasn't been there. "It's kind of hard to compare to what it's like not having it, since I really don't even remember what it's like." When I ask whether it feels more physical or mental Jat says it's both. "I'd almost say it's like the end of a long day at work where you feel exhausted. But I've never had a long day at work, so I don't really know that."
Canada is supposed to boast good healthcare, but even that doesn't help when you have something that is as hard to treat as CFS. Even though it's not a mental illness patients are often administered psychiatric drugs, sometimes because they suffer from secondary depression, sometimes because the doctors can't think of anything else. Jat has been prescribed various anti-depressants and sleeping pills. "The anti-depressants did somewhat help the emotional issues I was having at the time, but the side effects made my physical health much worse. None of the sleeping aids ever worked."
Besides the psychotropic approach Jat has never received any specific treatments. "The specialists I've seen have mostly just given basic advice on how to get better. This advice generally comes down to not overdoing it, but also not becoming completely sedentary." Unfortunately this is often the extent of what the doctors do for their patients suffering from CFS. They don't know enough to be able to help.
Coping with the practical issues
When you're living with a chronic illness the worst part often isn't the illness, but the living. There are medications for pain, but none for loneliness. "I haven't had any friends in real life since around the time I stopped going to school," Jat says. "Since I don't have a job or school and usually have other people running errands for me, I don't get out much. Living in the suburbs doesn't help either. There's practically nowhere to meet people and very little entertainment nearby."
But how do you cope with the illness? "After 13 years of being sick, I have, for the most part, learned to live with it. Sure I'm missing out on a lot in life, but I've accepted that. The biggest threat to my sanity is the boredom. It can be very difficult to find ways to kill time when I'm exhausted and feel like I can't do anything." He spends most of his time on the computer and passes time with music, games, movies and reading.
Living in a family consisting of three disabled people is not an easy feat. "The biggest problem with living with other people who are sick is being couped up with them 24/7. Tension can be high at times, and there's really no escape from it. On the plus side, we all understand the kind of position we're all in, so it's very supportive." Obviously there are also financial problems, as no one in the household is able to work.
"My mother has been on CPP (Canadian Pension Plan) for sometime now, and until my brother and I turned 18 we were receiving child support from our father. Now that each of us have turned 18, things have been rough. Both of us applied for ODSP (Ontario Disability Support Program) shortly before our 18th birthday. It took a year, but I was eventually accepted. We're still waiting to hear about my brother's application."
Since three people in the same family got sick at the same time, I have to ask Jat if he thinks CFS is infectious (the CDC has labeled CFS as "a number one priority infectious illness"), but he doesn't have an opinion about this. He believes their illness might have something to do with the paint that was used for the bathroom. "Or possibly even something in the area. Some company was dumping toxic chemicals in a creek just up the street we used to go to."
"All or nothing"
Jat doesn't usually talk much about his illness. Most people with CFS don't, for a variety of reasons. You never know what to expect. Sometimes you may be treated with genuine support, but most people are just uncomfortable to hear about it. Blatant ridicule is not unheard of. "I usually try not to mention it in order to avoid any trouble. Not everyone accepts it, and sometimes people give you shit for it. Even well intentioned people can say things which piss me off. But it usually comes up eventually, and I don't explicitly try to hide it."
"The thing that bothers me the most is that people seem to think it's all or nothing. If you can do one thing, you can do practically everything else. There's no in-between. I either have to pretend I can do nothing, or be told that 'surely you can go to school or work then!'" I guess these people never thought about what it's like having to stay home when other kids are going to school. It's heart-wrenching to think where Jat could be now, even though his own attitude about it sounds incredibly mature.
"Prior to becoming sick it looked like I had a bright future. I was top of the class and in a gifted program, popular, athletic, outgoing, etc. Since then things have changed dramatically, and I'm sure I've turned out to be a completely different person as a result. It's been a huge learning experience, and I tend to think that I'm a better person for it. While I may not be successful and have certainly missed a lot of my life, I'm quite happy with the person I've become as a result."
CFS comes in many different forms from mild to extremely severe. Some people get better with time while others decline. Despite having spent more than half of his life struggling with CFS, Jat is carefully optimistic. "Ever since I stopped going to school I've been getting continually better, albeit very slowly. I believe that as long as I continue to take it easy and not overdo it on a regular basis that trend should continue." He's not worried about ending up like the most severe cases. "Physically? I think I'll get better as time goes by (I have so far). Quality of life? More cynical speculation."