This blog was inspired by a tweet I saw yesterday from a ‘social worker’ in a thread about Long Covid. I took a screenshot of their tweet and my response, I hope the person who tweeted these remarks has the decency to delete their post as it is highly stigmatising and prejudicial to those with Long Covid. I have crossed through their Twitter handle with #Bekind in mind.
Historically, it has been very clear that many (not all) social workers hold the same opinion about M.E patients. It is easy to guess that this particular social worker would hold the same view about very similar illnesses. As both illnesses are ‘invisible’ (to those who don’t know what to look for) and the majority of/all tests come back ‘all clear’, it is much easier for social workers to believe the illness is psychosomatic than to contemplate that modern medicine simply isn’t good enough YET to be able to detect these particular diseases.
Within the M.E community, we know that historically and to this day, parents are falsely accused of Fabricated or Induced Illness (formerly Muchausen by Proxy). The Tymes Trust are doing an excellent job in tackling this issue, amongst many others, and are the ‘experts’ in this area. I would suggest that any parents of M.E or Long Covid-affected children contact Tymes Trust if they have any concerns regarding being disbelieved. They may be able to signpost to the most appropriate support if they are unable to help themselves.
As the NHS website states –
Fabricated or induced illness (FII) is a rare form of child abuse. It happens when a parent or carer, usually the child’s biological mother, exaggerates or deliberately causes symptoms of illness in the child.
-FII is also known as “Munchausen’s syndrome by proxy” (not to be confused with Munchausen’s syndrome, where a person pretends to be ill or causes illness or injury to themselves).
-Fabricated or induced illness (FII) covers a wide range of symptoms and behaviours involving parents seeking healthcare for a child. This ranges from extreme neglect (failing to get medical care) to induced illness.
As I have already stated, M.E does not show up in any tests. A parent has no way to prove their child is ill but, as a parent, they KNOW something is not right. This will be exactly the same for the parents of children with Long Covid. I had been hoping that, because Covid19 is ‘new’, that old-style prejudice is being questioned. But I feel this tweet shows that simply and worryingly is not the case.
This blog is not a no-holds-barred bashing of all social workers. It is a bit like how I view the medical profession. When it comes to M.E, the vast majority are as helpful as a chocolate fireguard – but one that additionally harms. However, they are AWESOME with other areas of healthcare and other diseases. I say that as a skin cancer ‘survivor’ and someone who has broken bones far too many times to mention. I am exceptionally grateful for our NHS, I just wish they would learn about our disease. In my opinion, it is the same with social workers. They play a key role in safeguarding children and protect many from abuse and neglect. However, I do feel that their blatantly poor knowledgebase on M.E harms both the patient and their families. Too many lives have been destroyed by false accusations of abuse and neglect.
Unapologetically BLATANT PROMOTION – Stripy Lightbulb CIC has training for professionals. There are courses for healthcare, business, and education professionals. The ‘best fit’ for social workers would be the healthcare course if they are dealing with adults and education if they have a duty of care over children and young adults. Either course will give a good grounding in this type of viral-onset illness (most, but not all, cases of M.E are viral-onset).
‘There is no training available’ is no longer a valid excuse.
I founded Stripy Lightbulb CIC in September 2018 to tackle our global health crisis with education. I filled a HUGE knowledge gap. Now, the issue is getting professionals to see that there is a need for them to be educated about our poorly understood disease. The e-training is there for anyone who wants it – 24/7.
As MD of Stripy Lightbulb CIC, I will be writing to the relevant Care and Quality Commission and Council to express my concerns about this tweet. It is clear from the tweet that social workers have a duty of care over Long Covid patients, despite it being a fairly new chronic illness, this level of ignorance has to be nipped in the bud before the problem escalates.
I for one can’t understand what social workers think we gain from ‘pretending’ to be sick. As a Foggy Follower tweeted yesterday, in response to my tweet –
Maybe they can get their retraining while being forced to live on the same small ‘benefits’ we have to live on. Ooh but maybe they can spend two years fighting for recognition first and have no income at all until they get to a tribunal just like a lot of pwme.
Being a M.E patient is not ‘easy’, we face stigma and neglect every day. If we could choose which illness to pretend to have, I personally would have chosen one that others didn’t see as hypochondria. I would certainly choose one where there are treatment options and/or a cure. An illness that meant Drs didn’t frequently do eye-rolls and respond with tuts when I say I have M.E would also be great! Why would we CHOOSE an illness that has disbelief and stigma as a side dish?
and Foggy (OBVIOUSLY)
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‘My Journey From ‘Healthy Person to ME Advocate’
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