Simply touching a laptop to study could trigger pain and headaches, a college student suffering from Fibromyalgia told The Malta Independent on Sunday.

Myalgic Encephalomyeletis (ME) and Fibromyalgia are two distinct chronic and invisible disabilities, which roughly make up 4% - 6 % of Malta's population. An estimated 75% to 85 % of these sufferers are predominantly women.

Fibromyalgia affects between two and five in every 100 people. It is the sixth most painful condition in the world and causes pain and stiffness to the bones, muscles and soft tissues.

As a result, Fibromyalgia sufferers constantly experience pain and find it difficult to cope with life and work, with 40% of Fibromyalgia sufferers unable to work entirely.

With May serving as national awareness month for Fibromyalgia and Myalgic Encephalomyeletis, this newsroom spoke to two women who suffer from the condition about their experiences getting their degrees and entering the working world while fighting chronic exhaustion.

21 year old Mandy Cascun (left) is in her final year of studies at Global College Malta and is working full-time, while 26 year old Cristabel Cutajar (right) has just completed a degree at the University of Malta and is working part-time.

They are both members of the ME, CFS and Fibromyalgia Alliance, the NGO that is working for Fibromyalgia and ME to be recognized by government as an official disability.

‘Having a three hour gap between lectures, I would feel destroyed’

Both Cascun and Cutajar began experiencing symptoms of Fibromyalgia from childhood, however it wasn’t until many years later that they were officially diagnosed.

Diagnosing Fibromyalgia occurs through a process of deduction, since there is no official test to diagnose an individual. Additionally, Fibromyalgia is a multi-system disease which affects many areas of the body. As a result, receiving an official diagnosis takes a long time.

Cutajar, who was diagnosed after eleven years of experiencing symptoms, considers herself “quite lucky” with her diagnosis, since the diagnosing process typically takes longer for others.

Both Cascun and Cutajar told this newsroom that their experiences obtaining their degrees were riddled with exhaustion due to their conditions.

For Cutajar, a large source of this exhaustion was simply moving from lecture to lecture.

“University is huge, so for me to walk from one place to another would exhaust me”, she said. “Or having a three hour gap sometimes between lectures, I would feel destroyed. I had no social life while in university, I was just trying to get through it”.

This exhaustion would only worse when faced with a long day of lectures ahead.

“With Fibromyalgia, you get symptoms that overlap with ADHD, including irritability and loss of attention”, Cutajar said. “Imagine having back to back lectures for 6 hours. I struggled and I would zone out after the first hour”.

Similarly, Cascun’s exhaustion also held her back from studying and completing coursework.     

“When I would touch my laptop to start research for an assignment, the pain and headaches would come straight away”, she said.

As a result, both Cutajar and Cascun sought extensions to complete their work. This process was no easy task.

At the University of Malta, students who require excess arrangements must get approval from a Senate first and, once approved, students could risk a drop in their final classification.

“The maximum you can take is two years of extra studies, however after taking the first year to finish your course, your final classification goes down, at least within our faculty”, Cutajar said.

Cascun also found trouble in getting extensions at college.

“They only give you one extension in the three years you’re there. If I’m going in and out of hospital this year, I won’t be able to do my assignments and I’ll fail”, she said.

With this in mind, Cascun has been unable to get an extension for her dissertation this year.

Asked how this makes her feel, she said that she feels stressed, overwhelmed and it prompts thoughts of dropping out of college altogether.

Cutajar received help and was given two extensions for her dissertation, but her condition posed a challenge to registering information.

“Sometimes I need to read a page five or six times because I still suffer from memory loss greatly. I used to go to my tutor and I used to forget why I was there”, she said.

‘I hope that until I finish we’ll stay online’

While Cascun could pursue lessons online before the pandemic, Cutajar was only able to attend lessons online when Covid-19 hit Malta. Online teaching has taken a huge load off her shoulders and enabled her to pursue her studies from the comfort of her home.

As a result, she told this newsroom that she now feels like “a contributing member of society”.  She hopes that online learning and teleworking will give people with disabilities the opportunity to work from home if they are unfit to attend work.

Cascun also hopes that lectures will continue to be provided online and worries about returning to lectures in person.

“I feel so tired, I hope that until I finish we’ll stay online”, she said.

‘Not many employers are aware of Fibromyalgia’

Finding flexibility at work has been a challenge for Cascun with her unpredictable condition.

“Unfortunately, I can’t control if I’m going to be in pain or not”, she said. “The agreement is Monday, Tuesday and Friday I work at home, while Wednesday and Thursday I'll work from the office. Sometimes I’ll ask if I can work from home because I’ll be feeling weak that day, and they won't accept that. There I don’t feel support”.

In order to rest on painful days, Cascun must take sick leave. She has used almost all of her leave so far this year.

Despite working part-time and not full-time, Cutajar noted that her work also left her feeling exhausted, however her colleagues had more of an understanding of her condition.

“I think it's in my advantage that it's such a small place and people are understanding. It's not corporate. I don’t know how it would be if I had to work full-time within a bigger organisation. It's a worry of mine going to work full-time eventually because sometimes, on my day off, I need to rest and do nothing. Not many employers are award of Fibromyalgia”.

‘You need to make your condition known and fight for your rights’

While both Cascun and Cutajar said that they received help for their conditions at university, there is still plenty of room for improvement to accommodate students who have chronic illnesses like Fibromyalgia and Myalgic Encephalomyeletis.

With only one extension given to her, Cascun noted that “more extensions would be helpful and put less stress” on her. Cutajar, on the other hand, said that it doesn’t make sense for students with chronic illnesses to routinely present doctor’s notes on their days off, since feeling exhausted is so common with Fibromyalgia.

Cascun noted that it’s not only college that should accommodate Fibromyalgia sufferers more, but also the government.

“The government need to devise a policy or a law that informs the public about Fibromyalgia, so that we can have a voice and people can understand our condition”, she said.

Despite these difficulties, prospective students who suffer from Fibromyalgia should not be put off from pursuing their studies, both Cascun and Cutajar said.

 “I'm not going to say it’s going to be easy, but if it’s something you really want, you'll achieve it ", said Cascun.

“Definitely speak up for help”, Cutajar said. “You need to make your condition known and fight for your rights and fights for what you need. Don’t give up because if you put your mind to something, you'll get there”.