8-year-old protests mistreatment by medical authorities

[Merry]

A little British girl with ME named Isla wrote for the Tymes Trust magazine about her experience trying to accommodate medical authorities who push her to do more than she feels like doing. I'll upload the image of the article (posted by Tom Kindlon on Facebook), but in case the print in the image is too small, here's what she says:

More, more, more
You are meant to understand my illness but all you do is push, push, push. Nothing I ever do is good enough. I am proud and think you will be pleased with me as I have been going to school so much more than before, but all you do is say I need to stay there longer, and if I feel ill I can't [go?] home early. I can't get to sleep at night and you make me feel like it is my fault. You tell my parents to ignore me at night time, even when I am upset and feeling scared and lonely. Lucky for me they ignore you! I am so tired but you say that I still have to get out of bed and walk even at the weekend after I have been at school all week. I don't like coming to see you, it makes me worry what you are going to ask me to do next. My mum tells you I sometimes feel worse but you tell us I just have to do more, more, more. You speak to my school and I worry they will be on your side and expect more of me too. I worry about what you are going to tell us to do next. I think you should care more about the children who come to see you and try to understand what they are going through.

 

[Empty]

Powerful words.
Kudos to Isla.

 

[Gijs]

Poor little girl. They don't understand your disease. If it was my daughter these abusers would have a serious problem.
Leave this child alone!!!

 

[ShyestofFlies]

Patient abuse is always disgusting, but child patient abuse is a particular category of awful. Those biomarkers can't come fast enough. Hard to call something a mental illness/phobia, etc when the body can prove to you it's ill. I don't think there's a mental illness with a biomarker at this time, but it's possible there is one.

Still- good for her speaking up. Just because someone has a medical degree and funding does not make them a god, does not make them right, does not mean they've spent the amount of time necessary to study your illness.

I hope regardless of this stuff for her sake she does not get worse, especially not permanently like many people with actual ME/CFS in these treatments do.

Rosarainbows (rosarainbows.wordpress.com) blogged about her experiences doing this "treatment," and now she is unable to speak because of her body's response to constantly pushing and has many other issues (worsened orthostatic intolerance, etc).

She was in a trial in the UK, but she is a young adult. I am sure they will not report what has happened to her, though, as it makes them look bad. "More, more, more" and "when you feel sick, do more than we told you!"

 

[Tony L]

What are we doing to this brave little girl and her parents. Same old warped thinking. Blame the parents. The child is damaged by poor parenting and if that cannot be corrected then the horror of loosing their child is a real possibility.

I speak from experience when I say that the mistreatment of this family will cause them trauma damage whether they survive as a family unit or not.

 

[Merry]

What are we doing to this brave little girl and her parents. Same old warped thinking. Blame the parents. The child is damaged by poor parenting and if that cannot be corrected then the horror of loosing their child is a real possibility.

I speak from experience when I say that the mistreatment of this family will cause them trauma damage whether they survive as a family unit or not.

Terrible that your family has experienced this. So sorry, @Tony L.

 

[ShyestofFlies]

What are we doing to this brave little girl and her parents. Same old warped thinking. Blame the parents. The child is damaged by poor parenting and if that cannot be corrected then the horror of loosing their child is a real possibility.

I speak from experience when I say that the mistreatment of this family will cause them trauma damage whether they survive as a family unit or not.

Sadly many illnesses go through this- it's often "Blame the parents" or at the very least "blame the mother." For a long time that was the thinking with autism, and there's still work by the community decades later to remove references to this thinking in literature/doctor advice/community suggestions.

I am sorry you have experienced this personally.