“Widespread pain around her whole body. Constant weaknesss and tiredness. Sensitivity to light and noise. Being allergic to the sun. These are only a few of 60 plus symptoms that my daughter – a Fibromyalgia sufferer – endures everyday,” says Antoinette, a 67-year-old separated mother of two.
Putting on a brave face, Antoinette says that she and her daughter manage to live off some €400 a month - €418, to be exact. She receives the lowest pension because she could only work part-time to take care of her children. Her daughter had to stop working two years ago because working was too painful.
“Up till a month ago I had a job and made around €300 extra a month, but I had to give it up.” Antoinette is currently fixing up her house to be able to host foreign language students – a small source of income. “ We are living on the povery line,” says Rebecca. “ Many like us do.”
‘I saw my daughter change’
Antoinette says that the thing that affected her the most was seeing her daughter change. “ She used to do perform ballet and play basketball and volleyball. But then she began to get tired and weak.” Another worry comes from the fact that even some relatives do not believe her daughter’s condition. “This happens to many FM sufferers. There are even parents who do not believe their children. Some do not understand and think that you only have to try harder and get more rest. It does not work that way.”
Rebecca joins in: “to give you an example, last night I slept at 1am and I woke up at 11am today. But I still feel like going home right now and sleep. Besides, I am itching to get out of these clothes, because they hurt.”
The financial situation is an obvious concer. “My daughter does not get any financial help. So who will take care of her when I’m no longer around? We are already going through hardship but I will do all I can as long as I can manage. Hopefully the Lord will give me more time, until FM sufferers get some sort of allowance.”
Rebecca says that, even if she eventually gets some form of allowance, the ability to fend on her own is no guarantee. “I am not one of the worst cases and I can take care of myself. But the thing about Fibromyalgia is that never know how you are going to wake up the following day. I could wake up much worse than I did today.” Some FM sufferers have described their situation as being prisoner in their own homes, says Antoinette. “Imagine not even being able to get our of your own flat to buy food. In reality I could possibly end up just like that.”
My mother cannot be my hero forever
For Rebecca, the possibility of facing her struggle alone is not her main worry. That would be selfish, she says. “One of my main worries is that mum cannot continue to be my hero all my life. At this age I should be helping her, not the other way round. It is humiliating asking your mum to give you money for this and that when you are 30 years old. I worry that she has to keep working until god knows when and I cannot help as much as I would like to, and once she is gone I am pretty much screwed. Once again, many people in my situation are the same.”
A never ending list of symptoms
So what exactly is Fybromialga? “It’s a neverending list of symptoms. To explain it better: the hair on your head hurts, the toes on your feet and fingers on your hand hurt, your clothes hurt, I get rashes. There are times when I get out of bed and I am all pins and needles and my body goes numb. At night a toss and turn – I have to flip over every half an hour because my body hurts. Even my ears hurt against the pillow. Sometimes I decide not to sleep at all because of the pain and discomfort. Your life just stops because of this condition. It changes you completely until you become just a fraction of what you were before. I used to be hyperactive and practice all kinds of sport. I used to go to nightclubs and return home at 4am, only to do it all over again the following night.”
But by the time Rebecca reached the age of 20, things started to change. “I began finding it hard to get out of bed. I lost my desire to go out and have fun. And I used to call in sick so many times that my employers started to question my motives. At the time I did no know what was going home so I always came up with the excuse that I had stayed out till late.”
What her employers did not know was that she was spending the first half an hour after waking up vomiting, after a hard struggle to wake up. “I used to wake up and feel as if I had a fight with Mike Tyson. This happened every day. I went to work looking like a zombie and I was chided for it because my colleagues did not know what was happening. Neither did I.”
Rebecca also started developing other symptoms associated with Fibromyalgia. “I had brain fog, which makes you do the stupidest things. Sometimes even opening a door becomes science. Everything becomes suddenly more difficult.”
Six years to diagnose
It took doctors around six years to diagnose Rebecca’s condition. Her mother actually says that her daughter was self-diagnosed. “She did a lot of blood tests and doctors used to tell her that everything was fine. They used to tell her that she was imagining things. One day she read an article on a newspaper and realised that she was suffering from many of the symptoms associated with Fibromyalgia. In a way she was self-diagnosed. We started going to specialists, some would believe her and some would not. Others would recommend a psychiatrist or endless lists of pills, which she never took.”
Rebecca points out that some tests are now available in Malta, though they are not too accurate and very expensive. “Many doctors are not updated on this subject. Most Fibromyalgia sufferers are more knowledgeable than doctors on the subject. Some doctors I spoke to had not even heard of it. The lack of knowledge has turned us into a sort of ‘sham’ in society.”
Society does not believe us
According to Rebecca, the fact that people with FM look normal is one reason why other people don’t beleive, or understand the condition. “I look normal. I eat, laugh and joke. But no one saw the struggle I went through this morning to get out of bed, and no one felt the pain I felt.”
The 30-year-old says doctors expect FM sufferers to look gloomy and depressed. If they do not, they might not believe the patient. “Unfortunately many people with FM and ME do try to commit suicide, because apart from the depression you get because poeple do not believe you and because the government does not support you, we are left alone to fend for ourselves, and we find closed doors everywhere.”
Rebecca had to stop working two years ago because working was becoming too painful. “If I sit on a chair I will get pain here, if I stand up I get pain somewhere else.
She cannot even take medication because her condition makes her allergic to most pills. “I also avoid taking painkillers because my body would get used to them and I have it really bad they would hardly have any effect.” She says, however, that the promised free pills could be helpful to other with FM. At leas they would ease the financial burden, as the pills cost some €200 a month.
No time for a relationship
Married people who have FM might have it a bit easier because their spouses can be of great help. But finding love seems to be off the cards for Rebecca. “I simply to not have time for a relationship. Between trying to find a way to earn some money and helping my father with his small business there is no time left.” According to her mother, Rebecca has a couple of friends, but they rarely meet up. “Firstly because she cannot go out for a dring and do the stuff young people do and secondly because she does not have the money to go out. I do offer her money, but she does not accept it.”
This is not living life
“This condition pushes you into despair,” says Rebecca. Being part of an NGO to create awareness on the condition, Mr Camilleri says she received three suicide calls last month, from other sufferers of the condition. Another NGO member received six calls.
“There are times when I ask myself why bother to live. After all, this is not living. I am just floating past. I don’t do anything. I am at home 24/7. I don’t have money to go out with friends and if I do I have to rest for days beforehand. I know my house inside out, I can walk around blindfolded. I don’t live. It’s not even survival. You go wherever the wind takes you and most of the time its asleep in bed.”
She says however, that financial help from the government would make things much easier. “Pills are helpful to many of us, but since FM cannot be treated with a one-size-fits-all approach, financial assistance would be even better. It would help us meet our individual needs, like paying to use a heated pool or doing some specific activities.
Fibromyalgia affects around 2% of the Maltese population.