How to others cope? UK

I have been off work for about 5 months due to worsening AVM symptoms.
I am slowly returning to work but trying to claim benefits for the months I was off sick.
Before my diagnosis, I was on a 0-hour contract and was in the process of going permanent, but I wasn´t in a rush thinking I would have enough job security as a nurse anyway :sweat:

Unfortunately, as a 20-something-year-old-year-old I didn’t think about being forced to take time off due to my health.
I haven´t worked enough hours with them to be entitled to claim statutory sick pay from them. I moved on to employment and support allowance, which was also denied due to insufficient NI contribution (I am a Dutchie who moved to the UK in 2020). 5 months ago I also claimed income protection from my insurance, but this is still under investigation.

Maybe this is just a moan, but I honestly don´t know how others cope.
5 months without income has been tough and I don´t know where to go from here.
My credit card is maxed out and I am nowhere near being able to return to work full-time.
I hope to receive gamma-knife treatment in March, but this won´t be a quick fix.

Really sorry to hear how things are going, the AVM is challenging enough for us, let alone the added factors you have! In Canada there is great opportunity for casual employment as a nurse, meaning as and when. A lot of nurses I know have retired, don;t mean to age myself…,and just work the casual shifts. Really totally within their control when they work. I have no idea if such opportunities exist.

The second thought, and I apologize for really no idea on benefits, any possibility of some type of support from the Netherlands? We have a variety of employment assistance programs, but have no idea how it would work living in a different country for me here let alone for you. I really wish I could have more to offer. I hope gamma happens for you and the next phase of the journey can begin. Stay Strong, John.

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You are certainly understood how you feel here. Unfortunately, even with the understanding across the.l board, coping is quite difficult. I remember when my bleed happened (still hard to talk about), I thought I’d go right back to work a week after being released from the hospital. When I got home, I was suffering from so much depression and fear that I just couldn’t do it. I was in my masters program and I had to accept a full semester away, stopping all of my research and concluding most of my academic work that school year. A heart breaker. Of course now, two years later, I’m back to working full time after finishing my masters. Weirdly, I wish I didn’t have to work. My head hurts so frequently and I suffer from so much work, going to work is difficult. Especially as a high school teacher where I’m expected to work long hours and deal with over a 100 students. I am so exhausted and I’m certain this work contributes to my swelling. That said, if I don’t work, then I’m not affording my treatment for my avm. A catch 22.

Here is the one piece of advice I can give you for some sort of peace; find something (a hobby maybe) that gives your mind a moment of peace. Something to distract you. For me, I have my mom drive me (I’m not supposed to drive right now because of recent seizures) down to the local railroad tracks and I watch the trains go by. I get my phone out and I get a video of them going by. It’s free, it requires no physical exertion on my part, and I can quit whenever I want. Sounds silly, but it’s my hobby. It was huge for bringing me at least some peace to all of my fears and troubles that come along with the illness. Finding something relaxing and free that’ll distract your head for a moment may be helpful for you. It doesn’t solve all the problems of course. But, there’s at least a break.



I don’t know enough about the benefits system to suggest specific things you should look into but I would say go to a Citizen’s Advice Bureau and see what they can tell you about. I do think you’re very unfortunate to fall between so many provisions. It may be that you’ve uncovered everything and those reasons for not being covered are all there is but I’d hope CAB might be able to help.

Do let us know how you get on.

Very best wishes,


Hi there, I haven’t been on this forum for a while but when I read your post I felt compelled to respond. I can’t imagine how you are coping with your situation and to be honest I am shocked there isn’t some statutory interim illness benefit. In Ireland (which I’m sure is a pan-european system) if you don’t have enough social insurance contributions you can apply through your local social protection office for social welfare assistance payment. It is means tested though but it sounds like if you are reliant on credit card it would not be difficult to evidence. Perhaps there is a Brexit factor here as the EU social protection payment rules may not apply. I wish all the best with the treatment. It’s great the caught your AVM before it ruptured. My son is 31 and has a bilateral grade 4 AVM across his basal ganglia. The right sided AVM ruptured in February 2021 leaving with a significant acquired brain injury. Thankfully his employer has been really good and provides him with income protection payments on top of his invalidity pension. At this stage though while he is still in an acquired brain injury rehab programme, it is unlikely he will return to his previous role as cognitively he has lost alot of higher executive cognitive function.
Keep the faith, you will get there and the prospect of treatment while scary is a great opportunity to preventatively treat your AVM!!

Thanks everyone for the responses! This forum has been a big support for me through all of it and still is.
I am slowly getting back to work, but I won’t be able to do full-time anytime soon I think.
There is a benefit to work whenever and where suits you, but this comes with no stability financially and physically, another work place every week and having to adapt each time to a different work environment will be too much for me.
I will contact the advice bureau, thank you!
I do think the timing has been wrong for everything, if I got diagnosed a few months later I would have had enough NI contribution, but my body was done with trying to keep up with everything I guess.
It does hurt though, I worked through Covid with raging migraines not knowing about my avm and aneurysm and just putting it down to the lack of oxygen due to the face PPE. I feel let down by both countries.
However, I know I’m very lucky to have found it before a bleed and I admire how others cope with everything when I read their stories on this platform! :pensive:


In short, it sucks

I just recently was disqualified from disability

At least, I’m still hanging on by threads of what’s left of my business & get state insurance

Countries differ a lot, even the states do here

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