Tuesday 8 September 2020

Just because you don't understand doesn't mean I'm faking!

I've lost count how many times I have been mistreated in healthcare because staff don't understand my illnesses or have preconceived [incorrect] beliefs around my illnesses.

Today (Friday 28th) was no exception.

Often my health can be like a toppled stack of dominos with one thing triggering another and another. Yesterday I had an asthma attack whilst home alone. I called Dad and thankfully he was on his way home. As my asthma attack worsened and it became harder to breath and me loosing conciseness Dad initially called NHS 111 who advised him to call 999 which he did.

An ambulance came and the EMT's where great and didn't rush the job and listened to my family on my medical history. 

Like a topped stack of dominos the asthma attack triggered a series of non-epileptic seizures which increased my pain due to having hypermobile painful joints (plus M.E pain) triggering more seizures. My seizures also affect my breathing as the muscles in my respiratory system, like all the other muscle in my body go into spasm during and after my seizures.

As it was and EMT crew there was little the could do and given my "complex" medical history they wanted to take me to A&E. Thankfully with much learnt team management at home around my health we manage well to avoid ambulances and A&E as it's the last place I want to be an often it exacerbates my symptoms with it being a busy and sensory overloading place and not the most autistic friendly place either.

But the main reason sadly why we avoid A&E is the countless occasions where I have been mistreated by staff who do not understand my health problems, symptoms and care needs. His has resulted in both myself and my family making formal complaints about the treatment I've and they've received and how on occasions I have been denied treatment or just bad attitudes or a lack of willingness to understand my illnesses.

Today was no exception. Whilst waiting for the Dr to see me and sort out my pain relief I had a few seizures mostlikmly triggered by my pain but also being back in A&E. Three staff members came to me. I was told to 'stop messing around' and to quit my body's seizure activity -which I have zero control over and tried to explain this. My right hand had clenched in spasm and they manually free one of my fingers to put on a pulse oximeter (why they couldn't;t have used my other hand I don't know. This is just some of what happened. Then in front of me (whilst I was conscious) one of the nurses said to the agency nurse/nursing assistant if she'd done any training on 'manipulative patients'?! IIt made me feel invisible, frustrated (as this is exactly why we avoid A&E) and also their attitude towards patients with non-epileptic seizures as well as making me feel as though I was putting it [the non-epileptic seizure] on in addition to the hope that I was also seeking some nice drugs out of it.

Just because may my not understand my illness doesn't mean it's not real or I'm faking! Yes my non-epileptic seizure are real and I have no control over them. I live wit chronic pain so when something exceeds my baseline pain I am in more pain than the average person that being said because I live chronic high levels of pain just because I'm not dreaming my head off doesn't mean I'm not in a lot of pain; I have just learnt to live with my pain. Yes my joints subluxations and dislocate more easily it doesn't mean that I'm exaggerating, having a hypermobility disorder is a very real thing. FND is a very real thing too, just because you can't see it on a brain scan or no now cause doesn't mean I'm putting on my symptoms.

So much more education needs to come to health healthcare professionals understand rare, lesser understood and complex conditions to prevent patients like me having to go through time and time again mistreatment especially when we need your [health care staff's] help more than ever. I find this especially when it comes to non-epileptic seizures (part of my FND diagnosis) and occasionally with chronic pain.

My view of A&E from my bed. I have a pale blue blanket covering me. The bed ides are up and the door is open. To my left is a chair and a sort of desk area. There are files on the wall. The door is propped open by a bin so I can see the A&E corridor. There are some dark blue curtains to give me privacy if needed.