I feel for you. I turn 50 this year and have been in your situation since I was early 20s. Sometimes we just get dealt a shit hand.

I’m now watching my 18yo eldest go through similar (yay for genetic susceptibilities!) and I’m hugely worried for her. This shit is not easy.

Practical advice -

Firstly - bloody hell you’re doing brilliantly on the savings scale: well fucking done! It’s not the number or the ‘plus sides’ of living at home, it’s the sheer force of will that got you to the point you got through a painful day, month after month, and earned that money yourself.

Secondly - Don’t let applying for PIP let you feel crapper than you already do; it’s designed to make you feel like that.

Be prepared to contest the DWP decision - appealing is almost part of the process. Don’t be surprised if they misquote everything you say (sad but true).

Thirdly - It doesn’t mean you’re ‘less than’ that you had to apply for PIP.

You have earned your PIP by your taxes, yes, but also by making it through every day despite your health. ‘Making it through’ is going to be your new job, with a new PIP salary.

Fourthly - Don’t feel ‘nothing-ised’ by having to be on PIP. It’s there for people like us.

It doesn’t mean you’re not worthy/ you’re not a contributing member of society because you’re not working.

It means you’ve been dealt a shit health-hand and you need the help.

5) Accept help. From friends. From family.

This is probably the hardest of all. Still learning it after 30-odd years.

6) Arm yourself: knowledge is power. Speak to any and all local and national charities working on your health condition. Speak to your GP and get a referral to Pathfinder.

Keep learning through official pathways and keep your mind open to the off-piste approach.

Close no lead down, keep learning. Avoid anyone or anything that mentions the word ‘cure’ - this is a major red flag.

6) Often with a chronic health condition we give up on GPs and even specialists because there’s no cure for our health issue and the treatments are basic. We get used to coping alone.

However - you need a paper trail of your health conditions for your PIP application.

Even as the years progress, KEEP contacting your GP, KEEP asking for any and all relevant consultant referrals.

7) Keep on top of the latest medical studies in your area of health.

Often we know more than GPs and even specialists at times.

8) Trust your gut: if you’re being medically gaslight don’t take it lying down, ask to speak to someone else. Keep asking for someone else until you’re truly heard.

Don’t give up. Rest for a while, sure, but get back into the fray when you’re ready.

9) Don’t give up on love: it’s out there.

I and many of my chronic health friends have partners and also families. I have a friend with a terminal illness who has a new partner who’s not a golddigger. Good sht can happen too! have a friend with a terminal illness who has a new partner who’s not a golddigger. Good sht can also happen!

10) Just because you feel fucking terrible and are on PIP doesn’t mean you should deny yourself fun: good morale will help your health.

Learn new hobbies and join groups like chair yoga, chronic pain Pilates if you can. Musical instruments like ukulele groups or organisations like ‘Gig Buddies’ can be fun.

You’ll meet people. You’ll feel more socially connected. You’ll be reminded you’re worth it - and more!

11) NEVER DOUBT YOURSELF AND YOUR EXPERIENCE OF YOUR HEALTH.

——

^ I’m sure you know all this since you’ve been here a long while already, but it’s always worth reiterating!

Also, I’ve mostly focussed on PIP here, but that’s because however entitled you are to a PIP award, it’s a whole heap of hell and you’ll need all the help you can get to stop the bastards getting you down.

With that in mind, since you have savings I suggest you contact an organisation like disabilityforms.co.uk and pay their £150 or whatever to help you fill in the PIP form (also, fightback for justice etc are all out there).

Also the same with LCWRA or similar. There are people who know how do forms properly.

Completing a PIP form is like doing an exam - they expect information to be presented in a particular way as they want to see it. You need educated and experienced help to speak their language.

——

Think about it: yYou’ve done brilliantly getting this far without much of the above.

This is simply another stage of life and it doesn’t have to be worse, it just has to be managed so that you don’t feel any worse, if that makes sense.

Your new job is about staying as physically and mentally stable as possible. And I can already tell you can do it!

Good luck x