How to cope when you feel you’re too much

south37

How do others manage, or what helps you get through when you feel your needs are seen as too much by others?

I’ve been trying to get support, but even support organisations have been unable, or unwilling, to provide the adjustments I need to access their support.

I know my needs are great, but I can’t help that. I’ve tried for many years to suppress them, but that ends up affecting me and I burn out and my needs become greater still. And now, I just cannot make myself ‘perform’ or jump through the hoops as I find them genuinely difficult, and often impossible to.

dolfrog

I know how you feel. I have similar problems related to my Auditory Processing Disorder (APD). All of my famly now have a clinical diagnosis of this lifelong disability, but we are still unable to find local NHS provided support we need, from the UK Medical Research Council recomended multi-discipline support team (Audiologist, Speech and Language Pathologist, and psychologist)

south37

@dolfrog it’s so demoralising isn’t it?
The support is supposedly there, but accessing it makes it feel as though it’s on another continent or is available only if you know the secret code.
I hope you find and are able to get the support you all need.

Kavita

I'm sorry you're going through this. It must be incredibly frustrating to keep asking for help and still feel unheard.

Your needs are not "too much." They are real, and they matter. The fact that pushing them aside led to burnout shows that ignoring them was never a sustainable solution.

Please try not to judge yourself by what others can or cannot accommodate. A service struggling to meet your needs does not mean you are asking for too much. You deserve support that is accessible and works for you.

Be kind to yourself. You're carrying a lot, and it sounds like you've been doing your best for a very long time.

south37

Thank you for your reply that really helped me when I was so distressed at the time.

I had stabilised and felt ready to tackle the next obstacle but again has put me back to square one saying contact at least initially HAS to be telephone or face to face. Despite this putting me at a significant disadvantage, and increasing distress and harmful thoughts.

The reason I need the support is because of this.

How do I get access to the support I need when it’s requiring me to do the thing I need the support with? Does anyone have any advice/help of what I can try?

I’ve repeatedly stated my needs and the equality act but repeatedly get met with refusal, with every organisation wanting to be the exception.

Rachel_Scope

Hi @south37, I'm so sorry you're struggling so much to get access to support.

Are you able to tell us more about the support you need and your accessibility needs?

I've sent you an email so be on the lookout for it.

south37

Hi @Rachel_Scope

Thank you, I will take a look.

I struggle with communication, I always have but only recently understanding why (ADHD and (suspected) Autism), I’m in a long period of burnout so each contact I have is draining. Live communication is especially difficult even without burnout - I can shutdown, struggle to explain myself clearly and effectively, agree to loaded questions to ‘keep the peace’ or people please and often end up in distress before, during and afterwards especially when it’s related to health, assessments or similar. I communicate much more effectively and reliably in writing, in my own time. But every service is wanting live communication and to be the exception to making the adjustments I need.

I feel I need adult social care support, but they won’t give me any indication of how long I can expect to wait for an assessment. I’ve asked GP, NHS and adult social care to decide between them how I get access to interim support and advocacy when I can’t manage live communication myself because of the distress it causes including leading to intense harmful thoughts. My GP initially responded once I chased them, but then I didn’t hear from them again so I made a formal complaint and they’ve reduced adjustments as a result rather than increasing them.

Each organisation I ask for support navigating this either signposts me elsewhere to services I’ve already tried, or says I have to do telephone or face to face assessments, which I cannot safely manage, at least without any support before, during and after to cope with the distress and difficulties I have with them.

I used to be able to mask and push through, but I just cannot do so now, instead I shutdown and have to avoid communicating to keep myself safe as that’s the only tool I have with no adequate support.

Does this make sense?

I’m constantly made to feel I’m asking for or experiencing something alien, and if it weren’t for groups and forums like this I’d believe them.

I’m also seen as though I’m being difficult, but I’m just trying to get the support I need to be able to manage long term as it’s not sustainable as I am now.

Kiki23

https://forum.scope.org.uk/discussion/147083/how-to-cope-when-you-feel-you-re-too-much

What you have written are my very own thoughts and feelings 💜

south37

@Kiki23 as hard as it is, it does help in some way knowing I’m not alone experiencing these difficulties. I hope for you too it offers some relief, even if small ❤️

Now we just need the key to unlock the miracle hidden support we’re always told to ask for!!

south37

@Kiki23 as hard as it is, it does help in some way knowing I’m not alone in these experiences and feelings. I how for you too it offers some relief, even if small ❤️

Now we just need to find the key to unlock all the magic support we’re always told to ask for!!

south37

Hi @Kiki23 as hard as it is, it does help in some way knowing I’m not alone in these experiences and feelings. I how for you too it offers some relief, even if small ❤️

Now we just need to find the key to unlock all the magic support we’re always told to ask for!!

(Apologies if this duplicates, I click post and then it disappear!?)

Kiki23

https://forum.scope.org.uk/discussion/comment/1134423#Comment_1134423

Ahhh thank you for your kind words and the encouragemet….Reading of others struggles painfully similar to mine indeed makes me feel less alone 💜

https://www.youtube.com/watch?v=NSWTZllisl0

south37

Kiki, as hard as it is, it does help in some way knowing I’m not alone in these experiences and feelings. I how for you too it offers some relief, even if small ❤️

Now we just need to find the key to unlock all the magic support we’re always told to ask for!!

(Apologies if this duplicates, I click post and then it disappear!?)

south37

@Kiki23 you’re welcome! And thank you too ❤️

It’s awful we have to go through this, but at least we can support each other.

And sorry for the reply spam, I’ve no idea why they disappeared and now they’ve all appeared how to delete them so they’ll have to stay lol

Holly_Scope

Hi @south37 thank you so much for elaborating yesterday. I can't imagine how draining and anxiety educing this all is. Adult Social Care sounds like a good idea but appreciate even this will likely cause distress. Do you have anybody close to you that you trust and feel comfortable with, that could act as an advocate for you to have these initial conversations on your behalf?

south37

Woken today straight into anxiety and rumination that’s building. Today has been causing and contributing to distress for weeks.

The reason: I have to attend an appointment in person today - it has to be in person as they refused to allow me to do it via post (the option was there) because I’d previously been given reasonable adjustments for a pervious appointment. So essentially saying I used up my ‘allowed’ allocation.

south37

@Holly_Scope Hi Holly,

The only person able to advocate for me is my Sister, but there’s content around my needs that I’m not comfortable discussing around her or putting her through so she’s not a reliable option, and this is one reason why I need adult social care support. This content is to do with the feelings the distress leads to and is a major factor in needing support, so isn’t easily avoided in discussion. I have considered it, but don’t feel she’s a suitable option.

She also has her own caring responsibilities as well as working.

south37

@cass21 I’m so sorry you have such difficulty too ❤️

I’ve often dreamed of living somewhere remote without any forced contact. I could happily go weeks or longer if allowed to.

As soon as a communication demand comes, my heart sinks especially when I’d finally been able to relax or have some relief for even a short time.

Masking as with contact itself is draining and isn’t sustainable, we end up worse off in the long-term I feel and everything becomes impossible as a result.

Stellar

Services are functionally **** in practice and are a cause of stress, like you and others have said. They use communication barriers as a reason to reduce their workload through decption and discrimination.

I cope by avoiding services as much as possible, and where possible, I recommend others do the same.

Rachel_Scope

I would encourage people to reach out for support from services when needed. They can be a crucial lifeline for those struggling.

Rachel_Scope

Have you looked into advocacy services @south37? Here's some information for you that could be useful https://www.scope.org.uk/advice-and-support/get-help-from-an-advocate I understand it'll be more communication needed from you but hopefully it would lead to getting a more suitable advocate who can help you.