Turning Patients Into Numbers

Imagine your life turned upside down with chronic symptoms like fatigue, stroke-like symptoms, brain fog, sharp chest pain, coughing up blood … and doctors can’t seem to figure out what is wrong. Then imagine your feelings when one of the doctors decides that this spectrum of symptoms is psychosomatic or “all in your head.”

I felt persecuted from the moment I was given a psychosomatic label. I found myself hostage to a diagnosis that I hadn’t even known existed: “conversion disorder.” Even though the diagnosis was hidden deep within my medical file under piles of negative test results, it seemed to reveal itself at each new doctors appointment or ER visit. This diagnostic code was now part of me as if it were a scarlet letter on my forehead.

I was trapped not only by my pain and debilitating symptoms, but also by physicians who didn’t know how to provide effective care. In my most delicate state of mind and body, I was authoritatively told: I must trust and accept a mental health diagnosis in order to be cured.

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  • Thankyou for this thoughtful and insightful piece.By passing the possibility of physical illness in favour of psychological has certainly been my experience in the UK.I was red flag textbook Encephalitis ( stiff neck,movement disorder,autonomic dysfunction etc. )yet banished to psychology on the grounds of a single clear MRI two days into illness,which is not uncommon in Enceph.Sadly, UK guideline tests of EEG and lumbar puncture were not performed at this crucial time.Bloods showed repeated elevated white cells for five months,lymph nodes swollen for two.At five months I was told suspected Encephalitis,at one year ,after a clear EEG at ten months I was ultimately put down as FND.Long term cognitive symptoms of memory and concentration and physical symptoms that behave like spasticity,co contraction and flexor spasm have not been verbally acknowledged ( neuro refused to answer any questions ) and although I was offered neuro drugs for symptoms,which I declined on side effects grounds, I was denied physio.My GP offers only further Psychology,who signed me off after four sessions,believing my problems were of physical origin.I have no idea if some of this 'damage' will be permanent- I was simply told that it could take years.There are so many of us,denied adequate testing,verbally disrespected and left to cope with no medical support.It is a huge disservice to patients.I am glad that you have been able to find an open minded doctor to attain a proper diagnosis and the respect and medical support that we all deserve. Angela x

  • Best treatment I have found for conversion disorder is seeing an osteopath for professional therapy.

    Often the body and the mind work together desensidize by alleviating symptoms through physical therapy osteopath someone who understands the nature of the body structure.

  • I had a bad car accident, I had a step in my neck and a broken collar bone and a head injury.

    During the course of the legal stuff following the accident it was suggested I had somatisation, or conversion. My life was upside and was very angry at that suggestion. Then I thought about it and was very happy that all it would take was some physiological intervention to get well again. I went to my GP and demanded he sort out the appointments for me. He was not very happy as he felt I was being led on. Anyway no matter which way I turned I could not get this magical treatment. I saw the neuropsychologist who told me I had deficits in executive functions, forward planning,memory etc etc. she told me it was for life and with some work I may recover some ability.

    I was scared then because when I read up on the conditions I realised it was a catch 22. You want to get better so you seek medical help. This supports the illness behaviour. So I avoided all medical help. I go to pain clinic and get accupuncture. I see a GP only when I'm in dire straights. I had a bladder infection for 3 months before I got help because I was too scared to see a GP. Urinary conditions are supposed to be a marker.

    In the end the legal people agreed that I had got a brain injury and a nerve injury affecting my arm, but also said there was a degree of functional overlay.

    I'm now 11 years on from that accident. I still have the same problems with memory and planning and time management, I still get extreme brain fatigue, I still have bluntness and problems with my filters between brain and mouth meaning I say what I think.

    I have not gotten worse but I have got better at managing my difficulties with help from the ABI team. I still have problems trusting healthcare providers.

    FND has been my undoing.

    At the end of the day it doesn't matter what they call it, it still has ruined my life and given me a new chapter which was horrific in the early days but has ended up giving me a lot more time to spend with my children and a new career.

    I was seen by a FND specialist from Glasgow as part of the legal case. He wouldn't see me as a patient as too long had passed between the injury occurring and the case being settled. I felt angry that he could say this FND was the cause then refuse to treat me. I fitted the tick boxes to be diagnosed but not to be treated.

    I felt abandoned.

    Now I just get on with getting on. I don't seem to have the problems that others do when I go to the website, no funny walks, spasms, fits, blindness etc. so I wonder if I had FND at all.

    I wish everyone well on their journey of recovery.

  • Sounds like Myalgic Encephalopathy to me, also known as CFS or SEID. But with the increase in proof that this is an actual disease it looks like psychiatrists have invented a new somataform disorder to hide you all under so they can keep selling GET and CBT.

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