Why I Fear The Doctor More Than The Disease

The only mood altering substance available for pHD’s is food. They seem to require a lot of it. Please use your influence to ensure that they are not malnourished.

One  pHD was eager to take part in a class for student doctors. Why not if it could help others? The doctor, who was very well intentioned, felt bad that he could not cure his illness. He had  overlooked the more obvious act that could have improved his life. The pHD earned no fee and was forced to get two buses home. Anyone else who taught them so much would be paid a fee. He caught another incurable illness, the common cold, on his trek home. That was curable for a very sall price.

Doctors must screen for oppression before they treat for depression. Many of the most oppressive parts of  pHD’s life can be solved with practical support.

Lesser illnesses are often overlooked when the pHD attends a hospital. Their discomfort, caused by something curable, can take second place to the novelty of a rare disorder.

The big money is now invested in measuring what the doctors know. But what if what they know is only 5% of the truth? Who measures and reports the other 95%? It may be cheaper to clear the blocks to communication and allow the families a voice. There is no need for interpreters. Listen to them. That’s curable.

HD families do not fit in the system in most countries because of its rarity. They are forced to work around this by availing of whatever they can even if it bends the rules. This strategy and other defenses, such as denial, are often crucial to their survival. Don’t take it away unless you can replace it with something equally useful.

A pHD seated can usually manage more with their hands. They are capable of a lot when they are motivated. I learned this from the person who said he could not make tea but he could roll his own cigarettes. Many families know that three points of contact is easier for pHD and provides more stability. Those who can rely on someone walking beside them can speak more clearly. It’s the multitasking that seems to fluster them. Some families can be very supportive by anticipating and allowing for these changes. Most don’t even realise it.

We police our police, our politicians and our priests yet we do not regulate the charity industry. This places vulnerable people at risk. Voluntary groups can be made up of self selecting people who may have no previous experience, no training and no consequences for actions or inactions. Most are dedicated and hard working. Regulation may be required.

Misdiagnosis usually leads to mistreatment. Some pHD's are told they are not unwell so they meet with ridicule rather than sympathy. So called behaviour problems may be the result of poor judgment, no judgment and/or disconnection from feelings. This lack of thought, caused by neurological deficit, can often mask mental health problems caused by the stress and strain of loss. Their lifelong trail of chaos and lack of direction can cause them to be easily led. That’s not a symptom Its a consequence. They are fantastic people despite or maybe because they have to face their own death. Because they are always children of other pHD’s they know how they are likely to die and how they will have to live with that. They rarely act like victims so it would be wrong to paint them as such. They are usually gutsy and optimistic and that courage and hope is needed for survival. For any individual or agency to take advantage of that for commercial gain is unacceptable

Anyone discussing a hypothetical situation will be less engaged than those living with it. Remind yourself and your colleagues that this is not a hypothetical situation and that the care of the living should take precedent over the paperwork.

Under promise and over deliver. Support self reliance.  Use every method available to nudge the system to meet their needs.  All intervention should be confidential as voyeurism is invasive and insensitive to families struggling with their own tensions.