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We want to hear from you: please tell us about your experience of the online community.

Hi, my name is CW11!

CW11

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Ami2301

Welcome to the community @CW11 would you like to tell us a bit about yourself?

chiarieds

Hi @CW11 - & welcome to this friendly & supportive community. How are you doing?

steve51

Hi @CW11

Good Evening & Welcome it’s great to meet you today.

I am one of the Community Champion’s here at Scope.

Please let me know if you need any help getting around???

@steve51

Tori_Scope

Hello and welcome to the community @CW11!

CW11

Wow so much support straight away and I have no idea what I am doing or where I need to be posting for advice or help. In answer to your question Ami2301 I am CW11, 44, female,former dancer and PA - retired early due to bad RTA, has Hypermobility (HEDS), Fibromyalgia, OA, Neuropathic pain among my physical issues and as an "adult survivor" - after many diagnoses (PTSD, BP, Depression, Anxiety) I am under the umbrella of BPD/EUPD. 20+ Years learning to live with and manage my "condition(s)", I have had to learn to fight for my rights and as such have a very keen interest in law and rights including civil, equality and consumer. I have recently come to the conclusion that no matter how well I educate myself or how hard I push for the truth and to be treated fairly that I have quite simply bitten off more than I can chew and I am at my wits end that I am not superwoman and am struggling to cope. I am the one person in my circle that everybody leans on for support and it pains me that when I need support there is nobody there that is capable of helping. I hope that answers your question Chiarieds and any you may have Steve51. Thanks for the welcome Tori_Scope - I am a bit of a mess at the moment but hoping I can find some help and support here

CW11

I am wondering if there is anyone here with knowledge of disability discrimination and whether suspension on an online gambling account after 3 + years of use on the basis of a known or perceived disability would count as discrimination?

When I signed up for the service in 2016 I was honest with the company that I was registered disabled and had a mental health diagnosis yet after three plus years of playing bingo with this company they closed my accounts using their brain injury protocol - because I have a mental health diagnosis!

I have followed the complaints procedure to the letter and I am at the point I feel as if the company is trying to drive me insane with its refusal to consider it has done anything wrong.

I have been dealing with my condition for more than half of my life - I live independently, drive a car and run my own home yet the company has decided I am too mentally incapacitated to continue using their sites.

Having requested a subject access request and receiving it piecemeal over a period of six months. I have read through the files and noted there is still information missing and that the company management campaigned against me, subjugating, bullying and gas-lighting for over a year trying and failing to build a case after I held them accountable for high value prizes I had won but not been sent.

The evidence used against me was falsely garnered during an unwarranted interrogation by support staff following a technical glitch.

Any advice anyone can offer me would be much appreciated.

chiarieds

Hi @CW11 - & thank you for your reply. I can identify in part, as I too have the hypermobile type of EDS (hEDS), OA + neuropathic pain. I'm sorry that you don't feel supported, having offered support yourself. You will certainly find this community supportive.

As far as your query goes about online gambling, I'm afraid I don't have any knowledge about this, sorry.

[Deleted User]

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Tori_Scope

Hi again @CW11! I also hope that you'll find the advice and support you need here. We're a great community, with lots of helpful and kind members

I'm sorry to hear that you're struggling to cope. Are you accessing any mental health or wellbeing support at the moment? It can be difficult to ask for help when you're expected to be the 'strong' friend that everyone relies on, but perhaps you could explain to those close to you that you're struggling and need some support from them?

In regards to where you can post to seek advice and support on the site, you might like to have a look through the different categories of discussion we host on here, which can be found by clicking the 'helpful groups' link on the home page of the community. I hope that helps? Please do let us know if you need any more help with finding your way around. It looks like you've worked out how to post and comment, so that's a good start!

I've made your comment about online gambling into a new post on the Disabled People category so that more people can find and answer your question

CW11

Hi @Tori_Scope I have completed many rounds of therapy sessions with both mind and family matters (4th time lucky) and have also completed 18 months - 2 years outreach in a specialist personality disorders group and have moved on recently to the more intensive 3 days a week program - which if I am honest is pretty tough even if shortened sessions online while under restrictions but will be another two years once we are at face to face groups in the therapeutic community. It is harder still feeling I must reduce my medications because the course relies on you not being impaired in any way so pain not fully managed.

CW11

Hi @bekindalways, thank you for your advice it is much appreciated

CW11

Hi @chiarieds, It is nice to finally meet someone else with the same physical symptoms. I wonder if you had many false diagnosis before they settled for hEDS?. I was always listed as hyper mobile but for some reason I was labeled with chronic pain syndrome and nerve damage with OA as they attributed all pain to injury. It was a problem with my feet and associated findings that decided I was more likely hEDS.

Tori_Scope

Hi @CW11. I'm glad that you're continuing to access some helpful support. That does sound tough, but will hopefully be worth it. It must be difficult having to do the programme remotely, but it's good that they have made plans to resume the face-to-face sessions.

I'm sorry to hear that you're not able to manage your pain properly during treatment. Is this something you've spoken to your mental health team about? I can only imagine that makes things considerably harder. Perhaps you could also speak to your medical team to see whether there are any other pain management options available to you?

janer1967

Hi and welcome to the community @CW11 Glad you have joined us here.

I do know a bit about discrimination but more in an employment area.

I would imagine the company is trying to show they are following safeguarding guidelines by not permitting you to use the site anymore. There has been lots of incidents of this sort of activity not being suitable for some with mental health conditions

I understand your frustration at being able to use the site for a period of time and suddenly not being allowed. I suppose they are protecting themselves and showing a duty of care

Is there not something else similar you could try

chiarieds

Hi @CW11 - In answer to your question, I saw a locum staff health Dr for sacro-iliac pain when I was about 20. He thought I had this rare genetic disorder, but he couldn't remember the name! He did say a term, which I've never forgotten, saying I had 'arthrocholasia multiplex congenita' because of my hypermobility.

Years later, I looked this up on the internet, & was taken to an EDS site in the USA, as there is an arthrocholasia type of EDS. I met the founder of our UK EDS Support group, who lived nearby, & she was sure I had EDS. She gave me the name of the best person to see, a geneticist that specialised in dermatology. I had to wait 2 & a half years to see him (with my son). So he confirmed what I'd already found out.

I had also researched, thinking due to our family's problems, we also had Chiari 1 Malformation (CM1). Now that only took me 10 years to raise awareness here in the UK that this can be associated with EDS. It's CM1 that's the cause of my neuropathic pain.