Lived Experience Forum

[Angels333]

Is there anyone else on the sane forum who after a lifetime of trauma and mental illness has developed FND/Conversion disorder and is using a wheelchair and has non epileptic seizures?

[cloudcore]

Hi @Angels333 ,

I have not personally had this experience, but I would like to understand more about what this is like for you, if you are comfortable to share.  

What does life with FND/Conversion disorder look like? And what kind of supports do you have in place?

from cloudcore

[Angels333]

I'm desperate, my life is out of control.

In April I was in a mental health clinic for my anxiey and to reduce my alcohol intake.  I have cptsd from childhood sexual abuse.

I fainted there after a few days. then it happenned again and again. My psychiatrist said I had conversion disorder.   He says it's nothing I am doing but it's something happening to me, that my trauma has triggered a response in my brain causing it to misfire.

Over the next few weeks I lost total function of my legs and my 'faints' were diagnosed as non epileptic seizures.  That was early May, I then spent 11 weeks in the neuro/Rehab ward at my local hospital, where I was diagnosed with functional neurological disorder (FND)  For the first 3 weeks I was completely bedridden with no access to a toilet or shower.

I now have some function in my legs and can crawl and stand up but I can't walk.  I have about 20 seizures a day.

I have lost my licence, I have lost my job, I can't participate in community activities nor my regular volunteering roles.

I am depressed and at risk.  I'm having difficulty with problem behaviours and intrusive thoughts.    I am tired, and 3 weeks ago I ended back in hospital for acting out on my intrusive thoughts.

I would love to connect with someone on Sane with a similar experience as I find there is a stigma on the FND site regarding mental health.

ANGELS333

[cloudcore]

Hi @Angels333 ,

I hear how much you have been through, it must have been so challenging and scary to have gone through so many life changes the last few months with those diagnoses. The powerlessness you felt during this time must have been awful.

I also hear that you are feeling desperate, depressed and at risk, and you have struggled with intrusive thoughts. I'm wondering how you are managing with those feelings and thoughts/behaviours  today? 

Here with you,

from cloudcore

[Angels333]

@cloudcore @I'm coping with alcohol,  the whole reason I was in the clinic in the first place was to get some control over my drinking.  It started 3 weeks ago today I was drinking in the toilet as my family think I'm sober...  so in a nutshell I am not coping

[Angels333]

@cloudcore  I see not many people respond, no one knows about this diagnosis, not even my psychologist.  I'm a freak...

[cloudcore]

Hi @Angels333 ,

Your distress is completely understandable, living with an unfamiliar diagnosis must be really isolating and painful. I'm so sorry to hear that there hasn't been enough support for you in this area.

I can also see that you were trying to cope with everything the best way that you could last night, how are you feeling today?

If you feel like you need extra support day to day, I would really encourage you to reach out to the SANE Help Centre or book a call/webchat with a peer support worker. They're there if you just need someone to talk to.

 from cloudcore

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We also acknowledge that discussions around alcohol and drinking can be triggering and/or upsetting for some in our community. For anyone reading that may be impacted by this discussion, please reach out to the Alcohol and Drugs Foundation on 1300 85 85 84, or the SANE Help Centre for counselling support. 

[Rhye]

@Angels333 I just wanted to jump in and acknowledge how difficult it is to not only receive a new diagnosis, but to be experiencing new symptoms along with the ones you're already too familiar with.

Whilst I don't have personal experience with conversion disorder, I have a friend with a family member who does. You are not alone in your experience, and whilst it may not be as common as some of the other mental health issues, it's definitely doesn't negate your experience.

What I can relate with is intrusive thoughts and how tiring and distressing these can be at times – how are you feeling today?

Rhye 

[Angels333]

@Rhye   Thanks for your reply.

Does your family member use a wheelchair? and have seizures?  It's so confronting for me where I feel my trauma has crippled me.

I have felt a little better today but still used self harm to cope this morning.

I feel like I don't want to live this life anymore.

ANGELS333

[Former-Member]

Hey @Angels333,

It sounds so difficult what you're trying to navigate- I'd be surprised if anyone could be in your shoes and not struggle too. I hope you can access all the support and care you need 💗

Sometimes it can take time for members to come across various threads in the forums- I hope you'll be able to hear from more people with experience of FND/Conversion Disorder. It sounds like it'd be really valuable to build a bit of a community 

I'll also check in with you by email about your wellbeing 💐