If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

I need to rant, I'm fed up in my journey..

Options
bluefox
bluefox Community member Posts: 636 Pioneering
I'm going to keep this brief and stick everything in bullet point but I'm so fed up, today I've been in tears to the crisis line about the way the last few years have gone in terms of getting help and support.

Anyway here goes

  • Always struggled with mental health since being a kid in terms of anxiety and avoidance and very shy. As a teenager and after the childhood trauma my brother put on me, I was severely anxious and very depressed. I was on Prozac at 16 and I was only diagnosed with depression because I kept complaining of physical complaints.
  • Had mental health problems throughout my life despite working from 18-34. My colleagues knew I was bad with my mental health and friends did. Always anxious and avoidance, social phobia, wanting to use taxis instead of public transport.
  • Aged 34, November 2020, starts having seizures that were non-epileptic in nature or dissociative, whatever name you want to give them, they're awful.
Anyway, neurologist gets involved and starts sending my GP nasty mail about me saying I'm highly health anxious after I sent him 3-4 pages of symptoms and things I was struggling with. It was during the pandemic and let me ask you, WHO WASN'T ANXIOUS about their HEALTH? Having seizures during a global pandemic when COVID was about was scary!

Anyway, I recently seen my medical records and I noted one of my GP's literally asked the CHEST X RAY SERVICE, not to let me have an x-ray because I was health anxious. Like, really? How is that fair. I was struggling with wheezing and light headedness at that point and had childhood asthma. Absolutely horrendous thing to read.

Living with FND and NEAD, other patients like myself struggle with the new symptoms and challenges we face as part of our condition. To be coined hypochondriacs is absolutely awful. How about care for patients in a compassionate and appropriate way and maybe we won't need to keep seeking reassurance or how about neurologists deliver a service for users of those conditions, so they're not left in the dark and sent away with a website: http://www.neurosymptoms.org - which ironically, when I told the other GP in the surgery that I didn't attend the GP practice recently because I looked up my own symptoms, he said you shouldn't do that. Okay, so why do neurologists and GP's share this information for FND/NEAD patients?

To top it all off, I then had an ADHD appointment with a psychiatrist who completely and utterly dismissed my difficulties. The letter he sent said I struggle with self-harm and recurrent suicidal thoughts but he felt I wasn't in an episode of depression because I was 'hyperkinetic', I asked him why did you describe me like that? I was highly anxious and he said, yes it means anxious. So I said why not describe myself like that? So in that month I self-harmed twice and had tons of suicidal thoughts, didn't bother to look after myself, carried on giving up my hobbies and interests, didn't see any friends or family but yeah, I guess I'm not depressed huh? Pretty sure the DSM manual has that as it's criteria. 

I appreciate I am challenging doctors and psychiatrists but when you are attacked with stigma, prejudice and mistreatment. Or denied your right  and opportunity to the care you deserve. Doctors are wonderful people but people like myself have paid into a system to put them in their seats. I deserve compassion and care despite my ongoing issues.

I am now literally afraid to even bother speaking to my GP practice. This break down in relationship and care, I am absolutely shocked to the core. 



Comments

  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,983 Disability Gamechanger
    edited December 2022
    Options

     You have been really brave and strong in sharing this with us @bluefox. I can really hear that things are difficult for you at the moment.

    It sounds like you recognise the difficulties you have experienced and continue to experience. 

    However, you challenge some things because everyone has experienced them. Though, you acknowledge that you experienced some additional difficulties.

    I can hear that the key to this is the lack of help and support you feel you have received. Namely, because your difficulties seem to have been dismissed at times.

    At the very least, you deserve to feel heard, cared for, helped, and supported rather than stigmatised, prejudiced, mistreated, and denied.

    In an ideal world, what would help and support look like for you at the moment? Please don’t hesitate to let us know if we can do anything to support you.

    We are all here for you and listening to you. Take care for now and we will look forward to, hopefully, hearing from you again soon :)

    Community Volunteer Adviser with professional knowledge of education, special educational needs and disabilities and EHCP's. Pronouns: She/her. 

    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.
  • Tori_Scope
    Tori_Scope Scope Posts: 12,503 Disability Gamechanger
    Options
    We all need to get things off of our chest sometimes @bluefox :) I hope that the weight feels a little lighter today? 
    So in that month I self-harmed twice and had tons of suicidal thoughts, didn't bother to look after myself, carried on giving up my hobbies and interests, didn't see any friends or family but yeah, I guess I'm not depressed huh? 
    Are you still feeling this way?
    National Campaigns Officer, she/her

    Sign our petition calling on politicians to stop demonising us
  • bluefox
    bluefox Community member Posts: 636 Pioneering
    edited December 2022
    Options
    We all need to get things off of our chest sometimes @bluefox :) I hope that the weight feels a little lighter today? 
    So in that month I self-harmed twice and had tons of suicidal thoughts, didn't bother to look after myself, carried on giving up my hobbies and interests, didn't see any friends or family but yeah, I guess I'm not depressed huh? 
    Are you still feeling this way?
    Yep. Still been like this since September when I had the assessment. The suicidal thoughts have been around for years but they’ve got worse and more frequent past 2 years. My partner is disgusted and has said he is going to try and help out with all this now. 
Complete our feedback form and tell us how we can make the community better.