I was recently contacted by Rebecca, a 37 year old woman with invisible disabilities who, despite her own life hurdles, is doing an excellent job taking care of her own mother. As a vulnerable carer, Rebecca has been desperately pleading to authorities to be vaccinated against COVID-19, but her pleas have gone unnoticed. This is her story…
I’m 37 yrs of age, and most of my life has gone wasted.
Half of my life has been taken away from me due to my invisible disabilities. I never got to do what normal adults do: travel, work full time, buy a house or simply go out to enjoy life with friends.
My invisible disabilities struck me badly at the age of 23, where I became mostly housebound. Before that I was juggling 2 to 3 jobs, which I had to reduce to one, until a 4 hour shift once a week became too much for me to handle. When healthy, a person takes things for granted, but when health is lost, one realises easily how the simple things in life are a blessing.
Suffering from Myalgic Encephalomyelitis (ME) and Fibromyalgia without knowing it, I felt lost and alone, as it took me over 10 years to get a validation of these disabilities by a couple of doctors who actually believed me. All the rest either treated me horribly and dismissed me or didn’t even know these conditions existed.
ME is not recognised by our neurology department, despite the fact that NICE guidelines, CDC and WHO acknowledge ME as a distinct neurological condition. Due to this, the Maltese Government doesn’t recognise us either, so we do not get any social help or financial help whatsoever. Due to this, my mother and I lived in poverty for many years, not being able to afford medication, vitamins and treatments that could help ease my symptoms, even though there is still no available cure yet.
My ambitions and dreams slowly vanished, my plans to have my own business crushed away and I felt I had no control over anything anymore. My mother was my carer for a very long time. I felt like I was a burden on everyone. With episodes of paralysis, confusion, sensory overload, to weakness that would stop me from being able to communicate or eat alone, I couldn’t take care of myself. At times even breathing felt too tiring for me.
By time, with a lot of rest and help I became stronger, however, it was very clear that I could never go back to work again. I became mostly housebound, living my life between the 4 walls of my house. I could occasionally go out, but that would lead to suffering for the next few days from PEM ( Post Exertional Malaise ), a key symptom only found in ME.
Steadily and luckily I discovered my coping mechanism and started managing a few more things while pacing myself without overdoing it: waking up with a list of 20 things to do, but realistically knowing you can only to do 2 or 3 if you are having an ‘okay’ day. But I never let myself feel discouraged despite doctors treating me like I was a mental case or that I was making it all up for attention. I promised myself that I was not going to give up on myself and that I was going to work on making my dreams come true.
But as they say, there is no rest for the wicked…
3 years ago my mother, a 76 year old, woke up with bright yellow eyes, and I immediately knew what it meant as she had a family history of it and it came as no surprise to her either. She got diagnosed with pancreatic cancer, one of the worst type of cancers, which meant she would be battling it throughout her whole life.
Due to this shocking news, our roles had to be reversed, and despite needing help myself I had to become a carer for her, something which I gladly took on board. Being an only family member, as a vulnerable carer myself it was difficult for me to keep up with her hospital appointments, surgeries, recovery time and chemotherapy. My mother always was and still is a strong woman, and thankfully to this day she battles on heroically, and I hope things will stay this way for a long time.
It was only due to this tragedy that the government helped us financially, which meant we were able to afford “commodities” we couldn’t afford before, such as pay bills and buying the medications needed. What hurt me the most though was when my mother once told me, “thanks to cancer at least we have some income coming in now”. Which daughter wants to hear that? How would anyone react to hearing that?
During this time, the NGO I form part of continued fighting for all the sufferers out there without a voice. At our meetings I mentioned to the ministers and the authorities we met what my mother had said to me, and all I got were stares of pity, yet no one seems to have any will to do anything to help us sufferers.
Last year another blow hit the world. Covid-19. A deadly virus sweeping through the world killing many vulnerable. One of the vulnerable people at risk of losing their lives is my own mother.
We have been very careful, mostly locked inside, meeting just a couple of people and doing the very basics one can do to survive ever since Covid-19 hit our shores. My mother is finally getting the vaccine and a sigh of relief could finally be exhaled…but then something dawned on me…what if I get sick? Who will take care of her? Who will take care of me?
As an ME sufferer I can easily go back to my worst stage through encountering such a virus, leaving me months if not years unable to fend for myself, let alone my mother too, who will soon be starting chemo again.
Our NGO has been trying to contact the Ministry of Health to get the ME sufferers in the priority list due to all their health risks. However the only answer it has gotten so far has been a generic one that states that “you are not vulnerable”. Yet the NICE guidelines clearly show that we ME sufferers do form part of the vulnerable group. Similarly, the MEA issued a Covid Priority Letter Template that states all the reasons why ME sufferers should be vaccinated along with the vulnerable group.
What about carers in general? Being a carer for a loved one is a responsibility not many understand. At times we are the only ones who are able to take care of our loved ones. If we are out of action then who will step in?
I am now very worried about this prospect, as chemotherapy day gets closer.
ME can possibly lead to death as a body becomes so weak and may not be able to fight against another virus, yet we are never considered…we keep falling through the cracks of every system and benefit.
While we thank Rebecca for bravely sharing her own personal struggles with us here at wham, I cannot help but wonder why…why do we keep on refusing to help those who truly need help and especially those that are also caring for others What is it with this country that one needs to be well known, have friends in high places, complain on social media or satisfy some unknown criteria to be fully acknowledged? What happened to ‘protecting the vulnerable’?
From my understanding, carers working in healthcare facilities have been fully vaccinated for weeks now. What is the difference between a carer working in a healthcare facility and a vulnerable carer working one-to-one with another vulnerable person apart from the number of people coming into contact with? Working privately as a registered carer doesn’t mean one is immune to COVID-19 or immune to spreading it. Maybe this is the problem we are facing in this country…too many discrepancies, too many uncertainties. Are authorities leaving loopholes deliberately so as to accommodate who they think should be treated differently? It’s a pity that Rebecca is being failed by the system in so many ways…no vaccination yet, both as a vulnerable person herself as well as a registered carer…
I have taken it on myself to contact the Minister of Health Dr Chris Fearne to be another voice for Rebecca, because I have learned not to close my eyes to suffering. Whilst I was asked to forward her details, which I did, Rebecca got the reply that “they are just the middle man and that it is not in their hands but in the hands of Primary Care”. Seriously? I have trouble believing that… or maybe then they should provide Rebecca with the contact details of the person in charge at Primary Care who can help her.
If you suffer from Fibromyalgia or ME, Rebecca would like to invite you to join the NGO Facebook support group ME,CFS & Fibromyalgia Alliance – Malta Vo/818 Private Group.
If you are the full time carer of a vulnerable person and would like to share your story on wham. Please email us at [email protected].
Claire Galea is a mum of three currently reading for a Degree in Nursing at the Faculty of Health Sciences, University of Malta, as a mature student. She is keen about holistic patient-centered care as well as public education about health-related subjects, which she frequently writes about on Wham as a Content Writer and Website Editor.
Claire is also passionate about spreading awareness on the negative effects that domestic abuse leaves on its victims’ mental, emotional, social and physical wellbeing. She is the author of two downloadable ebooks, namely Heal Your Life Forever and 5 Simple Steps To Creating The Life Of Your Dreams.
Click here to check out Claire’s full bio as well as a list of all her Wham published articles
