Suffering From The Inside

The build up was enormous! It was something I often did spontaneously and had taken for granted. But now that I had been diagnosed with Chronic Fatigue Syndrome it was all a different story. My friend (who also has CFS) and I decided to cheer ourselves up with a day at the movies. Building up what little energy we had for an afternoon out was an achievement in itself.

We arrived very excited about our proposed adventure, parking close in the disabled parking space. CFS is a disabling condition due to the limited energy levels and mobility; hence the government grants disabled parking to assist suffers with general living requirements that most of us take for granted. I was about to step out of the car when I was confronted with a lady standing at my window. She thundered, "You know this is a disabled park don't you?" "Yes", I replied pointing to my permit. She shook her head in disgust. "Well, what's wrong with you, you've got two legs and arms!" I couldn't believe what I was hearing! It was true I didn't have a wheelchair or an obvious disability but there are other disabilities. "What's wrong with you?" she demanded. "You're young, you're not sick!" I felt like I had to explain to her so I told her I had Chronic Fatigue Syndrome. "So what?" she said, "You can still walk". I was mortified and rage filled within me. I wanted to fight back but I couldn't, I was in shock and disbelief and I didn't have the energy. My friend and I walked away from the car with the lady still abusing us and shaking her head. I was shaking and so was my friend, we just couldn't believe what had happened!

Inside the cinema, I couldn't concentrate. I was irritated and beside myself. I think I was still in shock. I wanted to shout at the top of my lungs to everyone around, "CFS exists, it is a physical and a crippling disorder!" CFS needs recognition. I wanted everyone to understand that it can happen to anyone. I felt I had to prove my illness. I wanted to educate everyone; I wanted them to know what it was like living with this debilitating illness. Before contracting CFS, I lived a very active life, worked full time, exercised regularly and socialized like any normal mid 25-year-old, by no way could I be considered lazy.

The next two days were spent in bed, I had let my emotions get the better of me, and now I was suffering.

Making my friends understand my illness took a lot of energy. To this very day some still don't understand and I'm sure never will. When I was first diagnosed one year ago, friends would drop in and think there was nothing wrong with me. To them I looked my normal chirpy self, but only after they had gone would I collapse into my bed and suffer for days.

I must admit I do hold a brave face, I didn't want friends coming round to see me moping around the house. To my friends, it was like I had a bad case of the flu and soon enough I would get over it. They just didn't understand, while I looked OK on the outside, I was suffering on the inside. But how could they understand, I was having a hard enough time dealing with it myself. It's hard to comprehend how someone can be sick for such a long time!

Some friends doubted my illness and thought it was psychological; surprisingly I wasn't offended. I often doubted myself at times, but I assure you this definitely isn't a mental illness, it is physical!

However I did have family and close friends who really understood my illness; they were the ones who would pick me up through the tough times and have me laughing again.

CFS lacks recognition and awareness, resulting in doubting minds. Battling CFS sorts out who your true friends are as the good-timers drift away. CFS has been a learning curve for me and unfortunately progress is slow but in time I hope that I can educate as many people as I can!


- S.C.