The COVID-19 pandemic has given people a better understanding of what living with Fibromyalgia and chronic pain conditions is like, according to activist Ruth Debono.
The pandemic has seen all of society have to remain locked up at home for large stretches of time over the past year or so, a reality some chronic pain sufferers are all too familiar with.
“When it comes to our normal day-to-day life [the pandemic] didn’t make much of a difference because many sufferers are still housebound, or even bedbound. For someone with Fibromyalgia or ME, being locked at home is normal. What we are saying is that people in fact are understanding how we live our lives.
Debono is the CEO of the ME/CFS and Fibromyalgia Alliance, which she founded, together with a number of others in order to raise awareness about the conditions.
She was a guest on this morning’s episode of Lovin Daily where she explained how as a result, doing even the most basic of tasks becomes a gruelling challenge for sufferers.
“ME (Myalgic Encephalomyelitis) is a more serious illness. It means total fatigue. Everything you do exhausts you, even making a cup of coffee is something you need to rest after,” she said.
“With fibromyalgia, chronic pain is the most common symptom – pain all over your body. I wake up feeling like I’ve had an elephant on me. So in the morning, you need time to regain your physical ability just to be able to walk.
“Then, if you work, you need to think before doing anything. If your car is parked far away you need to make sure you wear comfortable shoes. You need to make sure you’re wearing light and comfortable clothes because your skin sometimes becomes very sensitive. You really need to plan before doing everything.”
She said that in many respects, the COVID-19 pandemic had given some people a glimpse into what living with chronic pain and fatigue is like. Those with more severe symptoms have described extreme fatigue which has in some cases persisted for a considerable length of time after they tested negative for the virus.
“Those who had more severe symptoms of COVID felt a bit of what we go through on a daily basis. Imagine living with COVID every day of your life. I mean every minute, every second – day and night. Sometimes it gets so bad that you feel like you’re going to die. Your breath literally goes away and the pain is so high you want to shut down.”
A big challenge faced by sufferers is that because they may outwardly seem to be leading a normal life, in reality, they are dealing with terrible pain and discomfort all throughout the day.
“People underestimate how difficult it is. For example, people ask you how you’re doing and expect you to say ok. I always say that I’m fine emotionally but in a lot of pain physically.”
While the alliance has now taken on somewhat of an advocacy role, it started off mainly intending to offer support.
“Things started to develop from there and we started making proposals to the government and now in a position where we are requesting recognition for Fibromyalgia and Chronic Fatigue Syndrome,” Debono said.
She explained that both conditions were severely debilitating, with symptoms ranging from chronic widespread pain and fatigue to migraines and trouble speaking.
“There are so many symptoms that you have to live with on a daily basis that it is in fact a disability,” she said.
As things stand, the conditions are recognised as an illness but not as a disability.
“We want to be recognised in the way that people living with other physical impairments are recognised, so that we too can benefit from invalidity pensions and other benefits the government gives to the physically impaired,” Debono explained.
She added that this recognition, and the financial support resulting from it, would significantly improve the quality of life of those suffering from these conditions
About a year and a half ago, the government said it would start to recognise fibromyalgia as a condition eligible for sick leave benefits, but while this has helped, Debono said it was not enough.
“The expenses are huge, and in reality, not everyone works. It’s only a percentage of sufferers that will benefit from sick leave, but we also need home help, work from home, we need refunds on medication amounting to over €100 a month, refund on therapies…it’s amazing how much money we spend a month in order for to try and have something resembling a normal life,” she said.
Debono said that a number of members of parliament and government officials are sympathetic to the cause, but the finances for a change in classification have not yet been made available.
The alliance is currently urging sufferers as well as the general public to take part in a challenge where they post facts about what it is like to live with these conditions and to tag five friends on social media in order to spread awareness.
The group is also urging sufferers to get in touch with the alliance and to attend support meetings.
“Many people have told us what a relief it was for them to be able to speak freely among people that can understand what they’re going through,” Debono said.
Share this with someone that needs to read it and if you’re a sufferer get in touch with the Alliance