An invisible disease, a silent illness - the people who live with ME

At the age of 20, Rebecca Camilleri went from being a very energetic young woman to always wanting to sleep, feeling constant pain and nausea.

Lara Caruana: “Living with fibromyalgia is a constant battle, both psychologically and physically”
Lara Caruana: “Living with fibromyalgia is a constant battle, both psychologically and physically”

"Every morning I wake up exhausted, before the day even begins. I battle my way out of bed and tell myself that today will be different... though it never really is. How often do people say 'every single part of my body aches'? Well, in my case this is literal because, literally, every single part of my body does hurt!"

Rebecca Camilleri is a 29-year-old woman suffering from ME/fibromyalgia - a chronic condition where sufferers often describe symptoms of hurting all over their body and feeling consistently exhausted.

The repercussions of this condition aren't just physical but also mental, emotional and financial.

Doctors who examine people with fibromyalgia often cannot find anything that is specifically wrong, even after a number of tests.

This was the case for Rebecca as well. At the age of 20, she went from being a very energetic young woman to always wanting to sleep, feeling constant pain and nausea.

"My hair feels too heavy for my head, my skin burns and anything I wear against my skin feels like burning. My fingernails feel like they are being pulled out, and I feel like someone is hitting me with a hammer all over, feeling as if I'm carrying a tonne of bricks on my shoulders. The chest pains are unbearable... and that's not even mentioning the brain fog," Rebecca explains.

"For six years, I went from one doctor to another, always taking blood tests with doctors telling me that it was all in my head. They accused me of being spoilt and a hypochondriac. I was told so many things that I felt myself going insane, because this person wasn't me."

She admits losing the best years of her life because of this illness. "I have lost jobs, opportunities and friends and I'm still losing out on important parts of my life."

One day, she was surfing the net to try and understand what she was going through.

She eventually came across an article which struck close to home. 

When Rebecca made yet another appointment with a medical professor to tell him what she had discovered, she was only met with scorn and indignation: "Searching and reading won't help you. We are here to tell you what you have and not the internet," she was told.

Dejected, Rebecca walked out of the professor's office, almost resigned to fact that the would never find any real answers. But after some more visits to "nasty specialists", she finally found one who really cared to listen to her properly, and helped her diagnose her condition.

"If I didn't continue searching, doctors would have simply pumped me up with pills and antidepressants... it's really because of my strong character that I didn't wind up as a drug addict or worse," Rebecca says.

And Rebecca isn't alone. Even though there is little public knowledge about this condition - which leaves its sufferers vulnerable to bullying and rejection - there are others who suffer from the same condition.

Lara Caruana is a lively 23-year-old girl who works as a news reporter with a local radio station. She was diagnosed with fibromyalgia six years ago. At age 17, after several months spent in and out of hospital because of the constant fatigue and pain, she was diagnosed with the disease.

"Living with fibromyalgia is a constant battle, both psychologically and physically. Every day I repeat to myself that as a person I am stronger than any medical condition. This way, I manage to go through my daily routine," Lara, who works on a fulltime basis, says.

It will never be easy, but Lara has made it a lifetime goal to adapt accordingly. "Not that it's easy now, but the first months were very difficult to come to terms with my condition. It took quite some time for me to adapt to the lifestyle changes I had to make, including matters which affect my future," Lara says.

"But nowadays I understand my limitations and have accepted that fibromyalgia is simply part of who I am today."

Three years ago, Lara also attempted to seek answers and possibly treatment from experts in the UK. "But it only served to confirm that there is no cure for fibromyalgia. And the only treatment basically consists of pain killers," she says.

With the determination to keep moving ahead no matter what, Rebecca also tries to get the best out of life even though this is in itself a challenge.

"We are slowly put aside by society, friends and life itself because no one understands what we are going through. It is called 'the silent sickness' for more than one reason. We look normal on the outside, but actually we are not. We are too weak to ask for help, and it is in our silence that we scream for help."

Due to a lack of family income, Rebecca started working at the age of 16. But with her condition worsening, a year ago she had to give up her job as a saleswoman.

"I used to wake up every morning feeling sick and throwing up at the end of my shift because I would feel so tired and weak. I used to call in sick very often and I used to be a little pressured by my boss," Rebecca says, admitting that she just couldn't take it anymore, also due to the fact that she was experiencing psychological bullying as a result of the job.

She gave up the job partly because she couldn't cope with the bullying anymore, and because she felt it was time for her to take control of her life.

Being passionate about crafts, she started her own small business selling handmade jewellery. Even though the income is barely enough to get her by, she is happy to be dedicating her time to something she enjoys. This enthusiasm is also sparked by the fact she has branched out and is now looking forward to expand.

A crucial difference in being 'self-employed' is that if she is unwell and cannot attend a fair to sell her handmade jewellery, no one will be there to bully her for not showing up for her job.

Still, her financial income remains one of the biggest problems: she lives with her brother and her 67-year-old single mother with barely enough income to make ends meet.

But what's most tragic about her condition is that it prevents her from enjoying life in the way a person her age normally would.

"My life is lived through the eyes of others. I look at the pictures posted on Facebook and see all this new stuff happening around me. I look at the photos and feel like I am still part of this world, but I feel too weak to go out. I get fewer and fewer invitations to go out as time goes by. Eventually, I will become invisible to them..."

"Every day my friends post new pictures on Facebook. As I go through them they remind me of all the things I am missing out on, all the fun and all the laughter."

As she continues scrolling through the pictures, she promises herself that next time she'd be part of the group.

But the invitation, sadly, never comes.

"And once again I see all those amazing moments of another part of my life which I missed out on! I feel all alone in a world full of strangers."

In Lara's eyes, fibromyalgia is a rollercoaster ride, with plenty of ups and downs. But she is resolute to keep positive.

"The only way I can continue to live my life is by accepting it, with all its symptoms. I only have two options: either give up on life or fight it. I choose to keep in mind that life is going to be difficult, but not impossible."

More in Health
Although ME is a seriously debilitating and chronic neurological disease, to date it is not recognised as a disability locally and neither is Fibromyalgia for that matter. Although many patients end up being house-bound and sometimes bed-bound, they are denied any form of support or assistance – be it medical expertise or any form of benefits and services offered to those with other disabilities. Many are living below the bread line. Unfortunately and erroneously ME and FM are constantly being used interchangeably. Although most people with ME go on to develope FM symptoms as the illness becomes more chronic, they are not the same illness.
"Patients used cannabis not only to alleviate pain but for almost all symptoms associated to [fibromyalgia], and no one reported worsening of symptoms following cannabis use. ... Significant relief of pain, stiffness, relaxation, somnolence, and perception of well-being, evaluated by VAS (visual analogue scales) before and two hours after cannabis self-administration was observed." Cannabis users in the study also reported higher overall mental health summary scores than did non-users. Investigators concluded: "The present results together with previous evidence seem to confirm the beneficial effects of cannabinoids on [fibromyalgia] symptoms.