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Living with Myalgic Encephalomyelitis

Published 11 May 2021

Photo of Rebecca Camilleri - one showing her with make up and ready to go out and the other photo of her at home in pain

“Myalgic Encephalomyelitis is not what you see in front of you, its what happens after you meet us. Me before going out vs me days after going out. In both pictures I am sick, but in the after I am much worse and completely bed bound for days.”

I was a hyperactive girl, full of hopes and dreams. Highly ambitious and hardworking, eager to live life and accomplish my goals. Little did I know that I would be stricken in my prime.

Since a very tender age, I remember suffering from acute pain, pain so sharp I would pass out, due to a cut-off switch in my brain that protected me. They blamed it on ‘growing pains’, yet I am no six-footer. My childhood, however was lovely and active, although pain and headaches always lurked in the background.

At the age of 17, after contracting glandular fever, everything changed. My body slowly stopped cooperating. I stopped all the sports I practised, simply to be able to manage work.

After a period when I felt better, deluding myself it was over, I decided to juggle three jobs but, very soon after, reality hit. From three jobs I went down to two, then to one, then barely could hold on to five hours a week. One day I woke up paralysed – my legs just wouldn’t move – and I knew I had to stop working.

It took me over 15 years of numerous doctor visits to be diagnosed with fibromyalgia (FM) and moderate Myalgia Encephalomyelitis (ME), mostly thanks to research I made as I was not believed by doctors. Being afflicted by an invisible disability means that we are often not believed and don’t look sick!

It seems that I had FM from a young age, and ME emerged after the glandular fever.

In these years I lost everything. I had to put aside my dreams, my life, my hobbies, my passion and myself. People ask for positivity, but there is very little to be positive about when your body is allergic to life.

With every activity comes post-exertional malaise. Your body basically shuts down for days, sometimes weeks and, if triggered badly, months and years. This can be anything from going grocery shopping to being over stimulated mentally, due to too much commotion.

Complete debilitating exhaustion, brain fog, pain, confusion amongst many other symptoms.

According to studies, ME sufferers score more poorly on quality of life than many major illnesses.

Living with such disabilities is lonely, frustrating and unpredictable. You never know when your severity can aggravate and leave you bed-bound for weeks. You start losing friends as you stop going out, and they eventually stop inviting you.

So I decided to start awareness through support meetings, and together with my colleague Ruth, we started an NGO advocating for these invisible disabilities to bring help to those suffering in silence.

Myalgic Encephalomyelitis is not what you see in front of you, it’s what happens after you meet us. You want to live, but every time you try, you pay the price, so very often we choose to safeguard our little energy by doing the bare minimum and rest.

We often live in poverty, struggling to be believed, sometimes by our own loved ones. I am lucky to have a mother that believes me and sees me through it all and great friends that remained.

Please, do not judge what you cannot see, do not downplay what you cannot feel.

Rebecca Camilleri
Pro and Events Manager at ME, CFS & Fibromyalgia Alliance Malta

12th May 2021 – ME, CFS and Fibromyalgia International Awareness Day