Invisible neurological 'disability'

[wednesdaynamesep]

I was diagnosed with a Chiari 1 malformation a few years ago after years of symptoms. At the time, I was stoic about it because the diagnosis helped me to identify triggers and I felt I could live with it. If very frugal, we could manage on DHs income.

The cost of living crises has changed things. We now can't scrape by and I have to try find work. This fills me with complete dread because my main symptom is flare ups of severe head pain, and the 'cure', is for me to sit very still for a week or so to give the meningococcal membrane time to heal. This is knitting friendly, but not work friendly.

The medical options are codiene based painkillers and / or nerve blocking meds - neither are options I fancy for obvious reasons, especially when I've found a safe way to deal with it. So, if I started working again, I'd have to do so with pain I can't control.

I haven't ever tried for government support because I've never considered myself disabled like other people, and didn't think it right for me to try claim anything when I didn't need to. DH has suggested I look into it now, but after hearing how awfully people are treated going through the process, I'm feeling incredibly anxious.

Are others in a similar position to me? From what I've described above, do you think I'd just be wasting my time and putting myself through hell for nothing?

Go for the benefits. You can still look for work that suits in the meantime, but don’t rush into it. Maybe something WFH?

See if Citizens Advice or your local authority has a benefits advisor, who can you help you through the application processes? They might take some of the stress off you?

Some ESA applications are decided on the papers alone - DD’s are.

Look into all of the assistance you are able to get, this isn't just for you it will take some financial pressure off your DH too.

Apply for anything you are entitled to.

My experience with applying for PIP was a very positive experience. Not just because I was awarded but I felt I was treated well over-all.

I've just looked. I don't feel I qualify for PIP, but possibly ESA. I'm going try find a Citizens Advice. I feel very reluctant to go through a process and be rejected. That would make me feel like an opportunistic chancer. I only want to do it if I'm genuinely entitled to it.

Will I need a letter from my neurologist to support? I'm wondering if I should contact him first before I do anything?

I feel really uncomfortable doing this. I feel as if I'm taking away from people who really need it. I have a friend who lives with cancer and manages to work. No one knows this about me at all. I haven't even told family. They just think I'm a SAHM. I'm almost feeling teary. Have no idea why.

Apply for Pip and be very honest about the worst days, but also be aware that 80% of applications are turned down, but that 80% of appeals are successful.