My body felt like lead
Living with an invisible illness
When I was 17, I got glandular fever.
I was severely ill for two weeks with a high fever, sickness, my head and eyes so painful I couldn't read or watch TV.
In my lucid moments all I could manage were audio books, which my parents would get from the library for me.
After two weeks I got better. Except I didn't.
I no longer had intense pain or a fever, but it was like someone had injected my body with lead, making every movement an effort. Walking to the bathroom and back (about ten paces) was enough to make me need to sit down for 20 minutes.
Over the next year we went back and forth to the doctors, who labelled it Chronic Fatigue Syndrome (CFS), but had nothing useful to add.
There would be good weeks and bad weeks, even a good month sometimes. I remember times when I would all but forget, like the time I went and played paintball for a friend's birthday - that put me back in bed for a month. Twice I had to drop out of college, while watching my friends drift away.
After the year I started to get physically better. Even then it took another six months to become emotionally secure, hat is, not panicking about going for a night out in case I got too cold (a key trigger) or too tired.
Since then I have mostly been OK. I certainly don't have the energy levels of a normal person; I get tired and run down very easily, but rather than getting the usual CFS symptoms, I'll pick up whatever is going round - a bad cold or a stomach bug. At least this is easier to explain to people.
I have had a few relapses, and am unfortunately going through one now.
It has been hard, especially since three years ago, at 23, I started studying again. This semester was supposed to be the last of my degree, and I was looking forward to starting my honours after the winter break. But due to my health I have now had to drop half my courses in order to manage my workload, and wait out the invisible illness.
My biggest pet peeve with CFS is people thinking I'm lazy, like when I answer the door to the postman in the middle of the afternoon in my pyjamas and they make some comment about how I should be out enjoying the sun.
Mostly I just use the excuse that I work late (which is true in a sense, when I'm well I work one night a week in a bar). But I say this not so much because it's true, but because people just don't understand these things.
As others have mentioned: friends are lost, we are labelled lazy by those who don't know us, and explaining it to people is a never-ending battle of patience.
As far as advice goes, the only thing you can really do is to try to stay positive. I know it's awful to say this, because between the feelings of 'Why me?' and 'This is so unfair!' and wanting to be out living your life not lying in bed watching others live theirs (social media really hasn't helped in this aspect!) it is nearly impossible.
I can only focus on the fact that I have gotten better in the past, so I can get better again.
View all contributions