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Literature by hugznstuff




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May 12, 2006
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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."
Even though I've been working as a journalist for almost six years now, I've only done one interview and that was back in 2001 or so. I interviewed some friends who have a successful short film group and the article was structured in a lame Q&A format. This time I wanted the result to be more literary. I've never really anything like this before and considering that I'm quite happy with the result. But I'd be really happy to hear any critiques and suggestions.

This is my way to honor the CFS Awareness Day, which is today. You can read more about it in my journal. I hope you'll find the piece informative and interesting. Jat didn't want to go with his real name in this interview, which I'm sure you'll understand.

The blue ribbon in the preview image is the ribbon for CFS awareness.

EDIT (May 2007): A year later, I'll update you on Jat's situation, and I'm happy that I have good news. He is a good friend of mine after all. Jat's brother got awarded disability soon after the completion of this article, so their money situation improved quite a bit. Jat also recently got accepted into a housing program which means he can probably move on his own in the near future. He has started on LDN after hearing about the good results I've got with it, and it seems to be helping him. Perhaps the whole family will be on it soon.

EDIT 2 (May 2008): Jat is doing quite fine. He's been on LDN for a year and he also moved on his own last summer. He has found many new friends and I think he's finally able to catch up on some of his missed youth.
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:iconmyn-anthony:
Myn-Anthony Featured By Owner Jun 24, 2012  Hobbyist General Artist
The title alone made me cry. That's exactly how it happened with my little brother. There's no way I could read the whole thing... I'm sure it's great, though. ^^;
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:iconevilabeyance:
evilabeyance Featured By Owner Jun 20, 2010
I have Fibromyalgia/ Chronic Fatigue, and Si joint disorder and Degenerative disc disease. This is close to understanding how I feel. its been years since i have felt well. Im 19 years old and on disability through work.

Thanks for Understanding
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:icondiamondie:
diamondie Featured By Owner Jun 30, 2010  Professional Writer
Sorry to hear about your multiple illnesses. I also got ill at a fairly young age, 15/16. I am 26 now and much, much better thanks to proper treatment, but still suffering from nasty complications of CFS/ME, like hypopituitarism (meaning I have become deficient in just about all hormones, and it's mostly untreated).

The latter two problems you mention are quite difficult to treat, as you probably know all too well - though that will greatly improve in the near future - but CFS/ME and fibromyalgia are well-treatable in most cases.
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:iconalyssa-wyssa:
alyssa-wyssa Featured By Owner Jun 16, 2010
Great article, I have CFS, aswell as Fibromyalgia, it's great to spread awareness, the article is so true, well done :hug:
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:iconsarah-vafidis:
Sarah-Vafidis Featured By Owner Nov 16, 2008  Hobbyist General Artist
that is truly great...
you captured the emotion and the feeling very well.
i also suffer from ME/CFS and it isn't a walk in the park, but with a few more pieces of work like this, word will get out and hopefully more people will be understanding.

great work.
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:iconxiewan:
xiewan Featured By Owner Dec 28, 2007  Hobbyist Photographer
I have CFS, and I think this is fantastic. It explains the disease and the sufferers thoughts so well! Thank you so much for being a part of creating awareness.
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:icondiamondie:
diamondie Featured By Owner Jan 11, 2008  Professional Writer
Thanks a lot. I'm glad to hear you appreciated the story. In case you didn't notice I also have another article about CFS on DA, [link] but it is about a person who's much more severely ill, and can be quite depressing to read (as if this one wasn't, but even more so).
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:iconxiewan:
xiewan Featured By Owner Jan 11, 2008  Hobbyist Photographer
Oh! Thank you. I'm going to read it.. just not right now. (I've got cotton in my head. hehe.)
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:icontaboh:
Taboh Featured By Owner Jul 30, 2007
I read both articles, the one that received the DD and this one. Both are very, very informative, and not outright attacking any party, but more simply stating the feelings of sufferers of CFS. Thank you for raising the awareness of the community. Thank you so much.
I'm really lucky that I don't suffer from it myself...I lead a very active lifestyle and I can't imagine what it must be like to have that gone over the course of many years, or, in more severe cases, just a couple of weeks, or faster.

It's also interesting to approach this article from the point of view of one whose relative and close friend recently (seven years ago) had a stroke and can no longer use the left side of his body. He was in therapy for six years after his stroke and gave up entirely on trying physical therapy. Presently, he's, and I hate to say this but I feel it is true, a guinea pig for some of the medication that doctors suspect can help to reconstruct some brain tissue after it has been damaged and/or lost. What I hate about it is that all of the tax money that, under California's former governor, might have gone toward researching 'cures' or treatments for his condition, has been contributed to researching trifling things like cosmetic solutions to melanoma.
It's so elating for me to read about a patient who is so optimistic about his condition, because being around the uncle who gave up on Physical therapy, and almost gave up on chemical and medicinal therapy, it's easy to become lulled into the belief that optimistic patients were a dying or dead breed.
Thank you so much.
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:icondaniellekiemel:
daniellekiemel Featured By Owner Apr 17, 2007  Student Photographer
I have CFS and this is amazing. Really well put together and it explains it so well! :]
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