I, the Carer

On the radio this morning they were talking about how there is ABSOLUTELY NO NHS PROVISION FOR SEVERE ME. In what other disease, Maeve Boothby-O'Neill’s father asked, would zero provision be tolerated?

In what other serious physical disease, I want to shout, would baseless, psychiatric lie after lie be tolerated as truth?

In what other serious physical disease would psychiatry be allowed to get away for decades with inflicting great , lasting and even deadly harm upon the most sick and vulnerable ?

In what other serious physical disease would sufferers, paralysed, in agony, unable to tolerate sound, light, touch, movement, chemicals, be left with nothing whatsoever, not even respect?

In what other serious physical disease would those who have it, simply not be believed?

In what other serious physical disease , almost 70 years after it was identified, would a complete lack of treatment and not even a hope of a cure, be tolerated?

For over 31 years, I the carer, have had to witness my wife’s tears as she tries to cling onto her tiny shred of life. 

I have spoken up, used all my energy to try to get better services for the most severely affected and fought so many obstacles with so few results. It is gutting to see how people are still being treated. It fills us with fear, the lack of understanding still present and the risks facing anyone who needs medical help. 

Yet still there is no clear way to identify ME specifically. This is the major stumbling block to progress to ever get right treatment In our opinion.

In the face of her overwhelming suffering, all I have to help her are my open arms and a broken heart.

I, the carer, I could scream, but that would be a disaster, it would likely trigger instant, catastrophic decline in my wife, so I remain silent. 

S