Accepting FND — Scope | Disability forum
New to the community? Remember to read our community guidelines and our community house rules.
Concerned about another member's safety or wellbeing? Find out how to let us know.

Accepting FND

Bexjarvis101
Bexjarvis101 Member Posts: 3 Listener
Hi all,
I'm new to this community and wanted to say 'hello!'.
I have just been diagnosed with FND. My Mother was diagnosed with Huntington's Disease last year and the professionals at the Genetics clinic thought my symptoms might be due to Huntington's, but as it turned out, I haven't got it which is brilliant. After discovering I had a negative result, I started wondering if my condition was 'all in my head!' and found that I was convinced that medical professionals suspected I was 'making it up' and just looking for attention!
For months and months I have felt suicidal as I know my condition is genuine but felt I wasn't being taken seriously and it's only now since I have been examined by the Neurologist that I have been told I do have a condition and it isn't 'in my head!'.
Have others experienced this? It's a chronic condition and isolating. 
We shouldn't allow the ignorant people out there to affect us. I am so glad I found this site as I'd like to offer my support to others and their families.
Bless,
Becky xx 




Comments

  • Richard_Scope
    Richard_Scope Posts: 2,927

    Scope community team

    edited March 2020
    Hi @Bexjarvis101, welcome to the community! It's great to have you here:)

    I have worked with people and families that have struggled long and hard to get a diagnosis of FND, as it can often be mistaken for mild CP or Dystonia. What you have experienced is quite common with the FND diagnosis journey, sadly.

    I look forward to talking more with and if you need anything give me a shout :)

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
  • Bexjarvis101
    Bexjarvis101 Member Posts: 3 Listener
    Bless you Richard, 
    Really good to get such a 'warming' response from you me darlin.
    At the end of the day we are all Humans and deserve to be treated fairly, no matter what conditions we have or disabilities.
    I have Osteoarthritis and Osteoporosis which is easy to explain as people can 'see it!' I walk with a stick and folks seem to cope with that on a cognitive level!
    Like yourself and many others, I struggle sometimes to explain to people when they ask 'well, whats wrong with you then?!'. 
    But when folks ask about a Neurological disorder, to me it's a bit like asking me 'how long is a piece of string!' and Neurology is a subject that so many out that don't suffer from or understand which leads to ignorance and discrimination.
    I suppose therefor it is down to informing the public and making conditions such as 'our's' easier to understand and support.
    Not every disability is physical and the more understanding,the better.
    xx



  • Bexjarvis101
    Bexjarvis101 Member Posts: 3 Listener
    Thing I find incredibly difficult with is when I have a mental 'blank!'...bit like Dementia! 
    I often read letters and emails wrong as well and get it completely the wrong way round which can be embarrassing! Especially if I've just rung someone and 'had a go' at them for a reason and then they turn round and say 'well, the letter doesn't say that!' and I go back and go very red faced and have apologise!
    Happens a lot, but now I've got a Support Worker who is just brilliant and helps me to understand communications better.
    I'd suggest to anyone with FND to get a Support Worker if they don't have support already. All you have to do is go on the web and put in 'local Support Workers' in your borough.
    love y'all x

Brightness

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.

Fancy a chat in our virtual coffee lounge?

Put the kettle on and have a chat in our coffee lounge with other members. We talk about hobbies, games and anything else you can think of!

Cerebral Palsy (CP) Online Cafe

Here's a new opportunity for people with CP or a similar disability (aged 20+) to get together and chat. The sessions are in partnership with CP Sport so you can find out more and meet people from both organisations.

Are you struggling?

Read our 'Coping with stress, low mood and isolation' support thread for a run-down of ideas on how to banish those blues and feel happier.

What do you think about the community?

Complete our feedback form and tell us how we can make the community a better space for you.

Information about COVID-19

If you have questions about the virus, please read our information and support which includes guidance on benefits, getting food and essentials and Cerebral Palsy.

Back to school this September?

Read tips on how to settle back in and handle any worries you or your children might be having this new term.