It would do no good, we are gaslighted with impunity. For instance, if we try to complain, ask for clarification over treatment or for further tests, we are threatened with Fabricating or Inducing Illness (FII). If they accuse you of FII they can take your children away within weeks. You get threaten with courts or educational penalties if you do not send your child to school.
Sexism goes to a whole new level when you are a mother, add a chronically ill child and you might as well whistle in the wind to be heard. The neoliberal approach which results in moralising discourse; that first blames the child, and then the parent of non-compliance, ineffective self-management along with some form of somation/disorder, is how they control us. They don’t have to have evidence of this, society just accepts it.
Who is going to listen to the mothers? Many have gone before me, their children have died with unspeakable pain. What we need is the public to stand by us, while the truth is told. MPs to put down their political empires, and see the reality.
I believe David Tuller is doing just that, he is telling the truth and giving us a voice. He is showing how science needs to be applied. One day maybe parents; mothers in particular will be able to get their voice heard and a sound diagnosis and the right treatment for their child, but not in this climate, mow is not the right time? Soon though, it might be.
-
pinklil Tina Rodwell • 3 days ago
I understand you, as parents, are in an excruciatingly difficult situation with the threat of the Family Court over your heads. You might be right that 'now' isn't quite the right time, but I'm guessing that could change quite quickly. May I ask?: are parents who have been at the receiving end of this abuse 'ready to go' if the terrain changed? Or is there such alarm that few parents are barely willing to talk to other parents for fear of what the BPS school might do by way of retribution and on the basis you can't sure whom you can trust?
Tina Rodwell pinklil • 11 hours ago
Thank you for asking. I will do my best to answer.
There are 101 answers to your question regarding ‘ready to go’, it’s hard to know where to go next, we seem to climb up a vertical wall, to find another face sticking in the way to bang our heads upon. When Sophia Mirza was forcibly taken from her home and later died. Her autopsy report should have silenced the medical profession into shame, she taped her removal, what happened to those people? The voice of the patients and their families should have been heard then, you can read all about this here http://www.sophiaandme.org.uk/. That was in 2005. There is a further 101 things I could say about that, but for brevity I will leave that for another time.
Have we gathered together; well most of the mothers are housebound unable to leave their young and very sick children, and therefore are isolated. We fight together for rights that should be just deployed without comment. Laws and safeguards are all there, but you must know about them, and then it is still incredibly difficult to use them. When we manage to get some form of solid foothold, it gets knocked from us, it is relentless. It is hard to trust, as we find actions speak louder than the words spoken to us ever do, not that we get a two-way conversation going with any of those who say they are there for us. Are we ‘ready to go’ in what direction, as there are so many angles to fight. It’s like watching a free climber attempt the Dawn wall, enough of us are prepared to climb, but which perspective should we take, and none of the climb is safe and many loose the will, and see no point.
Do parents have enough energy to keep climbing? You must first understand what energy, time and mental stamina it takes to have a child who is chronically ill. Now with us, we not only have a chronically ill child, but one that has been undiagnosed with the many comorbid conditions, some of which can be life threatening like – musculoskeletal problems, Ehlers-Danlos Syndrome, spontaneous arterial rupture, post orthostatic tachycardia, Lymes disease, kidney problems, urinary sepsis, tuboovarian abscess, many heart problems, Thyroid, Coeliac, Ulcerative Colitis, diabetes, cancer and tumours. None of these conditions are looked for, but within the community of parents that have children with ME, they are known problems. It is exhausting on all levels. Many deaths not reported as ME related, and hidden. When you are fighting on all fronts, it is hard to climb, mostly you hang on in desperation. Lots of our children are rushed to hospital with scenarios that doctors are not prepared for, but parents band together in support hoping anything they mention will help. Most doctors who knew how to treat ME have left the NHS. Their skill set is lost. So no we do not fear each other, we are guarded for good reason.
We are left caring and not being involved with the planning of that care. It is the biggest mistake. Mothers believe me, hold a lot of information about ME, do they know that? Yes, they do. Our children’s medical history, the family history, our experiences of how this condition called ME takes hold, would be a game changer. We are never asked for our experience, history or views, and when we approach with evidence we are not listened to, it is a BIG MISTAKE!!! BIG HUGE MISTAKE!!!
Then there is life, it takes time and energy from you. My husband now works double the hours, as I lost my job to care for our child. It would also seem I have lost my worth in society. I have lost myself because I am no longer free, to be myself. How can I explain how it is to have the simple pleasure of taking a dog for a walk ripped away from you? How each day I miss the freedom of walking and breathing in the earth, while the bids follow me in the hedgerows singing. The grief I feel as I walk or play football in the garden with my dogs, when all I see my little octomonkey on speed, as a shadow by my side. I sometimes look up to his room where his life has evolved for last four years. It pains me so to look at it from the outside, when once the outside was his joy. That boy has not changed, his body has. I see through that window his brave face smiling down at me, and my heart swells with pride at his tenacity to live life to the full. My son has never been told he is brave or that he is an inspiration. My son knows he has little to offer his friends and family. So, his ability to smile through what he has had to endure astounds me. He’s not alone in this, and I am not the only mother that feels that pride.
It is hard to take joy when all his has been denied him, by a body that has no energy or stamina. When an explosion of joy can take days for him to recover from. To take a monument to replenish my soul, with a breath-taking view of clouds passing by, just to breath in life, when I have no shared moments, no differences in life, no other. I will stop there, as you must live it to understand it, the words are just vacant and meaningless really.
The problem is ME leaves you alone in no man’s land, with everyone expecting you to be brave and soldier on, while taking pot shots and baking orders at you, sending you in different directions. However, I have a makeshift helmet made from a colander, old-fashioned dustbin lids as a bullet proof jacket, I have a rusty pair of pliers for the barbed wire, and evidence as a weapon; 25,000 children with ME walking wounded, housebound or bedbound. But who will follow me, are they able and willing, looking at my armour I’m not sure they would be?
But if they did, which battle is the most important to fight? Which rockface will lead us to the summit.