July 16, 2012

Cassandra, a Time to Change bloggerIn December last year I was walking home from another busy 12 hour shift, where I worked in a nursing home. It was a cold frosty night and I was exhausted from working three long days on no sleep. I remember walking home wishing and praying for sleep that coming night in order to get me through another 12 hour shift the next day. I could not let my fellow colleagues and more importantly the residents down by leaving them short staffed.

However that night something happened that changed my life in an instant. I was found collapsed on the cold street completely paralysed. Terrified. No idea what was wrong with me and anything could happen if you’re lying in the street on a dark night.

I remember this strong feeling of heaviness, I could not move or even talk. But I could hear everything that was going on around me. I found it incredibly frustrating (but somewhat amusing now looking back) listening to the paramedics and police trying to work out who I was and what had happened to me. I was scared and stuck. I could hear them coming to the wrong conclusions unable to say anything or direct them to my ICE (In Case of Emergency) numbers. Once they realised I was a carer (I was still wearing my uniform) and not a drunken 14 year old, they took more notice and more of an interest. By this point I think I was warming up a bit in the back of the ambulance and was able to mumble, by the way they were talking back to me I don’t think it was very coherent.

they were convinced that I had taken an overdose

They then found out that I was under the Mental Health Team and have a history of suicide and self harm. Great! So now they were convinced that I had taken an overdose, repeatedly asking me if and what I had taken. So much so that I was doubting myself and trying to remember if I had taken anything.

I found the switch from how I was perceived and treated through the different stages of discovering who I was, interesting and upsetting. It almost left me wishing that I was in fact a drunken 14 year old rather than someone who struggles with mental illness because the way I was judged was so much nicer than being a 19 year old who has mental health problems. I don’t think it even made any difference that I was working in a caring profession.

they were quick to jump to the conclusion that the reason for me being completely paralysed was psychological

Once at the hospital they were quick to jump to the conclusion that the reason for me being completely paralysed was psychological. After I had convinced them I hadn’t taken anything – with the help from a blood test!

Even though I was completely paralysed they were very quick to write me off as being physically OK even though I hadn’t had any tests or in fact been touched by a doctor. If I hadn’t been under the mental health team and have any history of mental health problems then you can imagine that I would have had a load of tests done. Instead I was written off as a faker and treated appallingly by hospital staff before being carted of back home, still unable to move, the next day. They reluctantly kept me in overnight because there weren’t any local psychiatric beds.

just because you have a mental illness, it does not mean that you can’t also be physically ill

Six months on I have regained the strength in my body after having to learn to walk again and accept that this sudden paralysis was something that is known as conversion disorder. But that is not the point, just because you have a mental illness, it does not mean that you can’t also be physically ill and it is no excuse for the way I was treated by hospital staff.

I was terrified. I had no idea what was happening to me, I had gone straight from helping people with their personal care needs to needing that same help myself. It was a shock and not helped by professionals telling me that there was nothing wrong with me and to stop faking it. If I could have got up and walked, or even sat up myself then I would have. I am an independent person and hate having to rely on others to do everything for me so I’d like to think that this experience has enabled me to have even more empathy for the people that I care for.

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I also have similar problems

<p>I have many similar problems as Cassandra. Ihave several complicated medical issues, Bipolar being just one of them, yet the treatment i receive from our local ospital is also appalling. So much so that my husband has launched a complaint to PALS and an investigation is underway. Why, in this supposed enlightened age do we have to fight just to be treated ith respect and dignity??</p>

PALS or is that enimies

<P>I would love to know how you get on with this. I have just resigned as a Public Govenor for a Mental Health Trust, one of my reasons was there is no proper complaints proceedure. Pals is just a person at a desk, they send your letter to the Manager of the service you are making coments on,and ask them to investigate. So the person or event that you want investigating is looked into by the people who did it. I had a case where a Mental Health Worker made dioratree remarks and shouted at a service user. At that time there was three active complaints with PALS about this person. The result was the service user who was unwell had a meeting with the abuser his manager an advocate who knew the whole story. That abusive person would not apologie made out it was all someone elses fault including the service user. It was then "solved as everybody happy" because the service user could not take anymore. The abusor is now training up as a ASW God help the cleints.</P>

how shocking...ive seen to

<P>how shocking...ive seen to many times that if you suffer mental health issues then its case of oh well its only panic attack or something,,and worst is in u.k nearly all gp,s put your physical symptons down to anxiety -depression its awfull ive experianced this first hand with my own doctors even though ive had proper physical illnesses ... :-( </P>

Told I was a hysteria and phycosamatic

After repeated episodes of stroke symptoms to find clear they looked up my history of depression and self harm and called me hysterical and all in my mind.

her experience is the norm

<p>When I was in the mental illness system it was the norm to assume I was a mental illness case and always neglect my physical health I had a number of physical problems internal bleeding from the meds, strep for two weeks before diagnosis etc before I decided to sue the mental health " providers". Its one of America's embarrassments their failure to take care of those with mental health issues. I think they want to see mental health as separate like dentists are but its all innerrelated u can't separate the human body into little compartments I assure you eventually it will catch up hopefully not in added on diseases!</p>

Unfortunately i have

<p>Unfortunately i have witnessed this disgraceful behaviour before. i was walking out with my auntie when unexpectantly she dropped to the ground and hit her head on the ground. Somebody witnessed this happen and had already called an ambulance. I helped my auntie give her information when the paramedics arrived. When she mentioned that she had schizophrenia i felt the paramedics physically recoil from her and started asking questions about when she last took her meds etc. I had to bring them back to task to dealing with the reason why they were called. </p>

Phisical?mental health can you have both

<P>Oh did that bring back memories,&nbsp;I was in a Mental Health unit&nbsp;I had been complaining about pain on a daily basis&nbsp;evenually I was taken to hospital to spend 5 days locked in a side room of a ward then returned&nbsp;the unit. I had no meds while in hospital put me back mentally&nbsp;I had to have two large injections a day, which were very painful, for four months until I was discharged and even then they wanted me to rest at home for a few days before going in for the operstion. My problem became an emergency so I had to go in to the teatre in the middle of the night.</P>

This scares me...

<p>This type of thing scares me. </p><p>I was an inpatient in a psychiatric hospital before I started my recovery, left the hospital and completed a degree. </p><p>Due to my patient history (my diagnosis, inpatient treatment and complaints about horrific side effects to medication I was made to take) I have been branded a time waster at my doctors surgery and am constantly presented with questions such as, "Are you feeling particulary down?" when I go to explain physical symptoms such as, a throat infection!</p><p>This makes me not want to seek medical attention (even when I know I need it), which is stupid but feels like my only option, until I have an obvious physical symptom.</p><p>I think it is disgusting that, through no fault of our own, we are not receiving the same treatment as anyone else. I personally feel that medical professionals don't recognise my capacity to get physically ill and write all of my physical illnesses as negative symptoms of mental illness, like stress or attention seeking, before belittling my intelligence and ignoring me. </p><p>I'm sorry that you had to suffer at the hands of ignorant health professionals and fear this for others. Like you, I am an independant person and wouldn't waste anybody's time. It upsets me that people are written off as being 'just mentally ill' and are not considered.</p>

I hate this reaction isn't uncommon!

<p>I hate that this reaction by hosiptal staff is not uncommon. &nbsp;After having an hospital admission myself, i was sent to see an outpaitents neurologist. &nbsp;She was 'intersted' in my symptoms at first, and started a phsyically exam to see what might be going on. &nbsp;Everything went well untill she saw my scared arms. &nbsp;The atmosphere in the room changed so quickly, she stopped the exam. &nbsp;Made me sit down and just said 'are you on medication...it will be down to them'. &nbsp;No blood test, noughing, just discharge. &nbsp;My mum was so angry and couldnt believe professionals would act that way. &nbsp;Luckily my gp is brilliant and i was referred to another neurologist. &nbsp;However I know that this wont be the last time i will get sure a reaction. &nbsp;</p>

Hi Cass it's Amanda from

<p>Hi Cass it's Amanda from college. I'm so sorry to hear about what happened and feel really disappointed at the people who let you down. I have taken inspiration from your story, as one day I could be working for the NHS as a Physio, and hope that in the future I can help people to get better not hinder them by not listening.</p><p> I really hope your story, among many others can help change people's attitudes and that future generations going to work in the NHS, like myself, are more aware of the problems people with mental problems face getting the proper care (either physically or mentally) that they deserve.</p><p>Good luck in the future and maybe one day I will experience a client similar to &nbsp;you and remember this story and hopefully give them a positive experience.</p>

Conversion disorder

I am currently going through conversion disorder I have all the symptoms as a stroke victim yet he MRI head and ct head have both come back fine after being told by many doctors since beginning of December that all these pains were in my head and they Wernt real :( yet all the pains I was feeling were very real and very painful they on 6th jan 2013 I woke up and was completely paralysed down my left hand side my partner rang 111 which sent an ambulance immediately the paramedics assumed I had a stroke so rushed my straight to a and e were I was left for 7 hours to then have a Doctor tell me I was making it all up as I struggled to understand his conclusion. Against his wishes another doctor admitted me that nite after being in a and e 11 hours on the ward a medical assessment team visited me and told me I would be sent for a ct head scan "for my reassurance" yet they didn't have any idea that nothing was wrong :( I have now been like this for 8weeks and have been under a physio and phycolgist better so far nothing seems to be getting better and I am now home which is even harder as I refuse to go out the house as I have to be in a wheelchair :( it's nice to know am not the only one going through this because I still haven't gr my head around why this has happened to me xx

Hemiplegic mirgraine....

Hi Karly - I had similar symptoms to you and i have been diagnosis with hemiplegic migraine. Think it might be worth you looking up! I didn't always get the head ache so its not like a normal mirgraine. On some meds in the morning now and its done the trick. xx


Hi thank you for your comment :) that is what they originally thought but they said that the numbness would have disappeared by now as my left side has been numb for 10 weeks now so they have ruled that out am so confused on what it is and don't actually understand it myself xx

Conversion Disorder

I have read your message. Same as me. I did thou have a stroke but symptoms repeated with clear CT. They say it all in my head literally and stop stressing about nothing.

Conversion Disorder

Hi, I am sorry for your experience. I had similar experience, a few years back. I was ill for 11 years and all my test results always came back normal. Though my symptoms which were mostly neurological persisted, the doctors always gave me the impression as though i was lying or making it up. I was sent to do numerous tests and was placed on so many medications. As the symptoms persisted, my medications were changed to stronger ones. It wasn't until April 2015 when I had an accident and hit my head, the last neurological doctor I saw took his time to listen to me and walk every part of my life in my head to see what the issue was. After our discussion, he referred me to a psychologist who was just as kind and understanding. I am a lot better today at least having a diagnosis and having it explained to me that it is not my fault made a whole lot of difference. Its the job of healthcare professionals to be more understanding and caring whether the case be physical or mental issue. Both aspects are just as vital for survival. One would expect that with the level of enlightenment today, the reactions towards people going through mental issues would be more empathic.

Thank you for your comment. I

Thank you for your comment. I would love to hear your story in full. Do you have a blog? I am someone with many physical and mental issues, who is in despair over the lack of adequate help out there. I am struggling to find the support I obviously need ...

Yea I am going to see a

Yea I am going to see a physiologist when they send me a appointment. I hope they can help me.

Thank you for describing your

Thank you for describing your experience. I too am appalled by the stigma attached to mental illness. I have so many physical and mental issues, I can no longer tell which one is feeding which. They seem so interconnected and I have no doubt they are! In a healthy body healthy mind, as the Greeks used to say, and vice versa. I wish doctors understood that both have to be treated with the same respect, attention and care. Sometimes, I feel they try to but they are frustrated as they still understand so little when it comes to conversion disorders, somatoform disorders, chronic pain and other neurological or neurobiological illnesses ... There should be more money invested in researching this arena and coming up with more effective ways to treat these health conditions.

What Happened to me too

I'm transgender and have a history of anxiety/depression. First I went to a cardiologist after my heart was racing faster than normal and it had a weird rythim, they told me it was anxiety but I pushed for a moniter, turns out I had superventricular tachycardia, same as my mom. A year later I began having trouble breathing, again they suspected anxiety, I had undiagnosed pnemonia for 3 months. Now I've been having uncontrollable muscle movements + contracts to the point my foot is turned completely inward. I went to the ER and before any tests came back we could tell they never believed me. I left completely unable to walk and with a diagnosis of conversion disorder. I'm aware that conversion disorder is a very real condition however I'm struggling with accepting it as I was treated as if I was faking the whole time b/c of my history with anxiety. I was just a scared 15 year old with no idea what was going on. They believe that my "trauma" was stopping Testosterone a few months prior due to the pnemonia. If any doctors are reading this I urge you to at least treat the patient like they are being heard even if you believe they may have a psychiatric diagnosis, it will help them in accepting it in the very least

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