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Let me start by explaining a bit about what mono actually is. Infectious mononucleosis is caused by a virus called Epstein Barr, after the guy who discovered it, I think. The virus is also linked to the disease multiple sclerosis and to a lot of cases of lymph cancer. That’s because the germs like to gather and spread via the lymph nodes, which are all over your body, and which form a vital part of your immune system. In England, they call it ‘glandular fever’ although technically, it’s all about your lymph nodes, not your glands.
People with mono may not even know they have it sometimes. It’s passed around in saliva, like the flu virus, and its symptoms can also feel a bit like a cold. Around 30 to 80 percent of all people actually carry the virus (it’s related to herpes, and like herpes, once you have it, it never leaves your system). If your system suppresses it successfully, you might think you’ve just had a cold, or you might not even notice it at all.
The difficulty starts for some people when their symptoms don’t go away after a few weeks. Often the bad cases start with tonsillitis, then headache, fatigue, nausea – you name it. In fact, mono has the widest variety of possible symptoms of any disease, and this is where I experienced my problem with doctors.
Doctors are fantastic human beings, who do their best to help people. But what this experience taught me is that if the medical profession doesn’t understand a disease or sickness of some kind, it has a real tendency to pretend it doesn’t exist. Doctors would often say things to me like “I’m not convinced.” With no further explanation or help. I wouldn’t have minded too much, because I’d already accepted there was no medical cure, but these doctors had to sign me off work, and help with insurance, so there were added difficulties for me if they wouldn’t believe me.
Now, there is a blood test for mono, but it only accounts for the sickness up to six weeks in duration. After that time, if your symptoms carry on, the doctors are likely to think you’re fibbing. Either that, or they think you may be attention seeking, or in some way mentally distressed.
Of course, by the time I’d been sick for several months, I was mentally distressed! But only about having an illness nobody really understands, about why I’d caught it, or what would happen to me. I had no other psychological problems and before my mono, I’d been an energetic, positive sort of person. I had been working night shifts and was really tired when I caught it – presumably that’s why it took hold. But nothing more.
In the end, I spent a whole year in bed, sleeping about 16 hours a day. I literally couldn’t move. Worse than that, my memory completely disappeared. It was like being 95 years old, physically and mentally. I would constantly forget my friends’ names and those of routine household objects. I couldn’t understand what was being said to me, because my head was full of what felt like cotton balls. It was incredibly difficult just to string a sentence together, so needless to say, I couldn’t work. Ultimately, I lost my high-powered career in broadcast journalism (plus my income), a large chunk of my social life, and with these things, my sense of self.
You see, your job and your social life give you a large part of your identity. Your memories and personality give you the rest of it. When you completely change your life overnight, lose your job, hobbies and normal brain power, and you feel terrible, after a few months, it leaves you wondering who on earth you are. It’s not an exaggeration to say it’s changed my life forever.
Remember, I was one of the lucky ones, because I recovered. Some people remain that way for years, or for their entire lives, and nobody can tell them why.
There are positive outcomes to this kind of situation, too. As for me, I changed my career, because once I stopped working, I realized I hadn’t really liked it anyway – I’d just grown attached to the cash and prestige. I began to travel a lot, learn different skills and hobbies and I took a master’s degree in Medical Anthropology because I wanted to learn more about why doctors are unable to help people with mono. These are all things I might never have experienced without my illness.
\What I’ve discovered is that mono is a sickness that responds only when the sufferer really pays attention to what their body and mind wants. For most, that means cutting out junk food, taking exercise in the fresh air, or perhaps doing yoga, and trying to connect your soul with your surroundings. Out go long working hours, alcohol binges, unhealthy relationships and so on. You have to simplify your life, and make your spirit and your body happy. It might have taken me a lifetime to learn these things, if I’d never had mono.
Fortunately, there is an increasing amount of scientific research being done on mono. Hopefully that means sufferers in future will get some better answers about why they’re feeling so terrible. But with any luck, it won’t be at the expense of the valuable lessons being sick can teach us, and the positive lifestyle changes that come from getting off the rat-race treadmill and taking a good long look inside your own mind.
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Comments from Our Readers
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"im glad someone else understands what mono (or glandular fever as i call it as im from england! :-) )feels like! i first had mono when i was 7 and i was sent to hospital as they thought it was mumps! for weeks i was in hospital as the symptoms are endless, and how you feel is unexplainable! so in desperation the only solution doctors came up with was to have my tonsils removed, and since then i have had it about 10 times in my life time! ( i am now 18),i was also told that glandular fevevr takes away some of your immune system as it damages it! so without tonsils and gettin gladular fever a lot, im catching everything else!, for years now im always tired, i have no energy and frequently feel low, this is all down to glandular fever and i deffinately think doctors need to look into it more as its NOT just a virus, it ruins your life! " - holly marie, January 7 2009 - reply |
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"my life was ruined after getting mono. i developed CFS and had to drop out of school, couldn't learn, remember, think, or read. i slept all day. this was 17 years ago.
3 years ago, my condition became severe and i could barely get out of bed.
now, i am on antiviral therapy under the care of dr. a. martin lerner in michigan. he had the disease himself for 8 years and recovered. he is brilliant.
the longer you wait to treat, the harder it is to get better.
good luck
sue" - sue, February 25 2009 - reply |
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"No one ever understands how hard it is to cope with mono (unless they have been in the same situation, of course). The virus has been out of my blood for a year now, but I still experience the symptoms on a daily basis. There is no sympathy from my friends, teachers, and guidance counselors. In fact, some are so inconsiderate that they tease me about being contagious (which I have not been for a year)." - Rose, May 5 2009 - reply |
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"this sounds so much like fibromyalgia, or lyme disease,, my doctors can't decide which i actually have, and it is so difficult,, but you are so right, even with any disease, you have to bring your mind, soul and body together to fight it. so glad u have learned that, it has taken me a long time, but slowly i am gaining ground. and of course, the next time someone says 'ITS ALL IN YOUR HEAD' you can say,, "OF COURSE IT IS, MY BODY IS TELLING ME SOMETHING IS WRONG,,,, AND MY BRAIN IS COMPREHENDING,,, WHY CAN'T YOUR'S????"""""""""""" DUHHHHHHHHHHHHH" - jesse_jean57, June 23 2009 - reply |
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"I'm so glad there are other people who understand this illness. I have had mono for a couple months now so nothing compared to other posters here but I must say that it is the worst thing ever. I used to be a very positive, energetic person. Now, even my significant other says I'm no fun anymore. I'm so frustrated because I can't enjoy the things I used to love and feel like a different person. Everytime I get the urge to do a little more than just the necessities, I fear the overwhelming tiredness and feverish feeling that follows the next day. I lost all my hobbies and motivation. My wedding day was hampered by mono because I was so nauseated and exhausted. The worst thing about mono is that you become a different person and it is a person you do not want to be--lazy and negative. I keep gaining flab because I can't exercise but at the same time I have to eat large and fatty meals or else I notice I feel sick. Sorry to be a downer but I hope there is a light at the end of this tunnel." - frustrated, October 23 2009 - reply |
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"I'm so glad there are other people who understand this illness. I have had mono for a couple months now so nothing compared to other posters here but I must say that it is the worst thing ever. I used to be a very positive, energetic person. Now, even my significant other says I'm no fun anymore. I'm so frustrated because I can't enjoy the things I used to love and feel like a different person. Everytime I get the urge to do a little more than just the necessities, I fear the overwhelming tiredness and feverish feeling that follows the next day. I lost all my hobbies and motivation. My wedding day was hampered by mono because I was so nauseated and exhausted. The worst thing about mono is that you become a different person and it is a person you do not want to be--lazy and negative. I keep gaining flab because I can't exercise but at the same time I have to eat large and fatty meals or else I notice I feel sick. Sorry to be a downer but I hope there is a light at the end of this tunnel." - frustrated, October 23 2009 - reply |
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"I think that this is a remarkable story, but I would like to know what year this story takes place in becasuse I think that if it was early in the 1980's or something they might not have done enough research on the mononucleosis disease. I certainly hope they have donce more research on mononucleosis because i have never had it and I don't want it now. I am always tired and i have a cold and have been throwing up for weeks so i think that I might have mononucleosis. Doctors better have a cure!" - Tinkerbelle, March 1 2010 - reply |
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