Support for disabled people starting self employment and government change worries

CherryPandaGirl

Hi,

I've been on pip and ESA contributions based in the support group for around 5yrs. I have POTS, EDS, Rheumatoid arthritis, fibromyalgia, hidradenitis suppiritiva, bladder and bowel incontinence and heating loss and these lovely conditions also leave me with lots of other symptomatic conditions caused by them as they all feed into each other.

To add to that I'm autistic and have ADHD, so life's a good old challenge just being me most days.

Before I claimed I had a business teaching a creative skill however I was so unwell and was pushing through pain and burnout daily which resulted in not only a mental breakdown but my health was impossible and I had to stop.

Being stuck unable to work has been so hard, I'm very creative and I love working, I've been considering if there's a way I can very slowly build a small business for myself. I can draw digitally and have been as part of my therapy to keep my hands moving and help my mental health. I think I could turn this art into products using a print on demand facility so all I do is upload the picture and they make the product and ship it. It's a tiny earning but I hope it'd be a way to rebuild my self esteem.

I was teaching classes and would love to do this but I don't think I'm up to it, and I couldnt be relied upon as my health changes by the hour some days.

I also enjoyed helping small businesses with marketing and sales advice, I have a lot of experience and I'd love to make use of this somehow.

I was wondering if there's any support set up to help us get small businesses of our own set up, maybe help to work out ideas of what we can do with our skills, funding, ongoing mentorship etc, even some free courses?

Given all the changes the government is making I'm terrified I'll lose my pip, I get 12 points on daily living but not 4 in one and due to my autism I struggle to fill the forms in or answer the questions effectively I get muddled and forget that explaining the sheer amount of pain I'm in or what happens if I'm not watched over isn't what they need to hear 🤦🙄 I submitted over 40 pages of detailed descriptions which they ignored, they even said my heating aids were by choice despite my audiology letter. So I'm terrified I'll lose this and my ESA soon. My husband earns just over the UC to allow us any support so we'll need to replace it all somehow. I'm not sleeping from the worry, which isn't helping my health.

I know if I had lots of support I could find a way to work for myself around my health, I could never work for someone else as I am ill in some form each day, but I'd be able to work as and when I'm ok if self employed.

How can I ever earn enough to replace what I'll lose when the new changes come in? Having read the updated info today it seems they're aware they'll be leaving many with nothing and don't care unless your household incomes low enough for UC. We have a mortgage, bills, three kids (2 under 18) and all three are neuro diverse (we don't get support for them) my husband's working far away to be able to earn as much as he can do we can just keep our heads above water. We don't have holidays etc as we can't afford it, my pip and ESA mean I can afford the pills, supplies etc to cope.

I'm sorry I know my post is double pronged but it's all part of the same worry. I really would love to work for myself again I'll probably manage 10 hours a week and with my skills and knowledge I think if I had some support and guidance too I could make it something good. I enjoy helping people too so it'd eventually benefit others.

At the same time I'm so overwhelmed with anxiety about this tsunami of pressure and stress that's here looming and I have no control over it. The new 4 points rule and me being unable to effectively fill out the forms and talk in the interview will be why I lose it all. Why can't it be on conditions? Just seeing I have 7 chronic illnesses and two neuro diverse diagnosis should be enough for them to see every blooming day is a struggle.

If anyone can offer advice and ideas I'd appreciate it. If I only had one side of this to consider I think I probably could find the way through eventually but I can't really prioritise either and do one as if I need to replace the money I need to start working asap to build it up and the changes start soon and my renewal will be in 2027 so I'm stuffed 😢🤦

I'd be so grateful for any support and advice.

Thank you for getting this far, I'm so sorry it's long xx