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Chronic Illness & Work; Employment, Benefits & Never Feeling Guilty.

August 24, 2018
Right, I’ll be honest right from the start.  I’ve put off writing this post, even though work and benefits are topics which so many readers ask me about.  The reason I’ve put it off is because my some of my own experiences needing financial support over the years have been pretty negative. That’s not the sort of thing you want to share with people who are often already struggling.  However, my own journey to forge a work path for myself has (although challenging at times) been  a largely positive experience. So that I do want to share.  I’m now on day 3 of trying to write this post, haha! My struggle between wanting to be blatantly honest and wanting to sugar-coat things a little bit to sound more positive is very, very real.  It’s all about balance, folks!

I have included links in red to as many resources as I can.  For readers who are not in the UK, do search out similar resources in your local area.

When you have a chronic illness, you can feel a bit crap (or a lot crap, depending on what you have) for much of the time. Working, whilst providing routine, interpersonal relationships, goals, achievements and most importantly Christmas parties, subsidised canteens and the odd office romance, can be a bit of a challenge on top of dealing with a medical condition. Oh and I nearly forgot. It provides us with money – you know, that thing we generally need to feed ourselves and put a roof over our heads. So yep, it’s kind of important.

Returning to work after an illness or returning with a brand new, shiny chronic condition can be a little daunting but it can also be exciting; it’s a sign of recovery and progression on a journey which may well have been frustrating at worst and downright distressing at best. So embrace this new phase, take a deep breath and see what you want to do and what you can do – you may be about to embark on a new and unexpected road in your life.

So, you’ve got hydrocephalus.  The starting point is; can you work?

And the only way to get the answer to this is to try.  Whatever stage you’re at (just been shunted/living with it a few years/newly diagnosed and no treatment plan yet) will determine your likelihood to be able to work.  Everybody will be different with regard to symptoms.  You HAVE to go at your own speed here. That’s an order.  Jordi has spoken. doasyou'retold

If you had a job before your diagnosis, try going back a couple of days a week when you feel ready/have the go-ahead from your surgeon and see how it goes.  If you haven’t been able to work for a while but you’d like to try, maybe try doing some voluntary work  (charity shops and hospitals are good starting points) for a while before you dip your toes back into the employment waters to get used to having a work routine (even if it’s only a day a week) and to start thinking about what you might find suitable.  After a while you’ll have a good idea of what you’re capable of now and you’ll be able to think about which of the following options may be good for you:

Option 1: Yes I Can Work
Your employer and HR department will be able to assist you back into your job and work with you to accommodate any new requirements you may have (these could be along the lines of needing more frequent breaks, working less hours, having less computer-based work to do, fitting an anti-glare screen to ease headaches if you do need to use computers, etc.).  If you can communicate to your boss what you feel will help you ease back into your role they should be able to provide you with what you need (they have a duty under the Equality Act to make reasonable adjustments to help you stay in your job). Don’t do too much too soon.  Literally go back a day a week and build slowly up from there.  If it’s too much at any point, make sure you speak up.  Communication is key!  It’s easy to feel you’re not doing enough if you were able to work more prior to your diagnosis but this is a very different situation and you are going to need to adapt accordingly.  It can be a nerve-wracking time but just getting back into your work environment can also be massively reassuring and encouraging.  And everyone will be so pleased to see you back!

Option 2: I Can Work But Struggle With My Original Job
This happened to me.  I went back to my job of 5 years thinking I’d just ease back into it. Nope.  That wasn’t going to happen.  After a few months of trying (and feeling very ill throughout) I realised I simply couldn’t do this job any more.  It was a very difficult time; I left with no job to go to and no idea of what I could do now (I was very symptomatic with visual distortions, hearing distortion and terrible headaches.  Literally doing anything other than flopping periodically on sofas was too much).  My desire to work was very strong however so I knew I had to find something else.  Time to think outside the box.  My job had been a high-pressure, long hours work environment (which I actually loved) and involved a ton of computer-based work.  None of that was going to work for me now.  If this sounds familiar to you, here are some ideas of what to consider:

  • Could you work from home? 

    Working from home = having your own ‘assistant’.

    Do you have a quiet space you could get some work done for a few hours each day?  If so (and you have a laptop or computer and a phone), it is quite possible to consider home working.  I started looking on websites and in papers  but this is going back 18 years!  Now employment sites such as IndeedWorkingMums and Fish4jobs have whole sections dedicated to work-from-home positions; in fact if you just Google ‘work from home jobs’ you’ll find plenty of resources!  They may not be the most inspiring or career-building options but they can provide a good starting point for you, give you something productive to do and a positive focus if you’re worried about your work future.  It may not be perfect but it can be a great stepping stone.

  • Think about the skills you have.  What are your passions?  What have you always fancied doing?  Is it possible to turn into a reality? You may think it’s too big a leap to take but trust me, it’s one worth taking if you are harbouring a career dream you haven’t yet fulfilled.  Of course being your own boss means you can accommodate dealing with any symptoms you may be having much more easily day-to-day!  It’s amazing what you can turn into income if you put your mind to it.
    Regency Delights

    Regency Delights – our re-enactment crew in Brighton Pavilon.

    As well as singing tuition, I started up a company with 3 friends as we liked the idea of doing Regency re-enactments in Brighton (being a Regency city).  So we did it.  Idea-turned-income.  Singing comes naturally to me; acting does not.  I still get so nervous before any event that we do but pushing myself out of my comfort zone is never a bad thing.  I always have so much fun in the end.  And I get paid for having that fun; win, win.

  • Look at training options. If you feel like branching out on your own, have a look at local courses which might help you.  Your local library can be a good starting point.  Check out adult education courses in your area.  The OU is of course always a good option if you’d like to consider a degree.  Join a local group focusing on your area of interest and talk to members there for ideas; often talking your ideas out is the first step to your new career. Meetup is a fab can use it on a computer or your phone; basically loads of groups meeting in your local area, covering everything from fitness to socialising to business-startup discussions.  And if you can’t find what you’re looking for, you can start your own Meetup.
  • Check the details. If you have a good idea of what you’d like to do, also check out what you legally need to do to get things up and running.  The government website has a good introductory section.  Startups also has lots of helpful information.
  • How I changed my career by feeling the pee-your-pants-fear-and-doing-it-anyway: I remember feeling a very strange sense of elation when I’d got over the shock of losing my job.  I felt now I could do anything I wanted to do.  Which was a bit daft because there was nothing actually stopping me doing whatever I wanted to do before, only I was on a path which had felt a bit conveyor-belt-like. I felt unable to get off it.  Looking back, I know I wasn’t truly happy.  Only nothing was THAT bad so I felt it was wrong to want to speak out and totally change direction. whichwaytogo Being diagnosed with a life-changing condition seemed to give me the courage to do it.  I loved singing and had been trained all my life so I joined a band as soon as I was able.  I didn’t plan to make a living as a band singer but it we were doing paid gigs so it was a little income.  I decided to better my skills by learning guitar whilst I was still recovering from my surgery.  I went to a little music studio called Nick’s in Brighton to look for a guitar to buy.  The owner got chatting to me (he was teaching the bass guitarist in my band at the time) and offered me a job as a singing teacher at the end of our conversation.  I thought he was nuts.  He was serious.  He gave me as many intensive training sessions in teaching as I could manage (I was upfront about my health situation from the get-go), booked me in with my first student a month later (who booked again for the next week and brought her friend who also booked a lesson with me) – and hey presto!  New career.  True, I was so completely terrified before my first lesson that Mum had to take me for a coffee and then frog-march me to the studio to make sure I didn’t do a runner, but I remember the immense excitement that I also felt.  It was scary as hell.  But just closing my eyes and stepping off the ledge made me realise that I wasn’t necessarily going to fall. Instead, it was up all the way after that.  It wasn’t an instant arrival; I had a lot of training to do along the way in terms of teaching skills.  I had to absolutely cement my understanding of the voice, how it worked and how to communicate that easily to people with all manner of different vocal styles and abilities.  It took a year or so for me to really become confident as a teacher; the fact all my students were booking repeat lessons with me for months on end was also a good indicator!  I spent over 15 years working as a (successful) singing teacher and even though I’m now employed (as opposed to self-employed), singing tuition will always be something I can fall back on with confidence should I want or need to.

Option 3: I Can’t Work – Now What?
This may be true for a period of time, or it may be permanent.  Whatever the time scale, the most important thing is to not despair. The overwhelming message I get from people who are unable to work due to their hydro is that they feel guilty for ‘doing nothing’.  Losing the ability to work following an illness can be devastating but it’s crucial to remember that this is NOT YOUR FAULT.  You know this.  However.  Since 2012 the government has been drip-feeding through the following narrative, lauding people who work as being those who ‘do the right thing’.  Not that you probably need examples, but here are a few: ‘for too long, we’ve had a system where people who did the right thing – who get up in the morning and work hard – felt penalised for it’ (George Osborne, 2013), ‘you are rewarded for working hard and doing the right thing’ (David Cameron 2012), ‘they uphold their end of the deal – they do the right thing, they work hard, they pay their taxes’ (Theresa May, 2016)….and so on. carljungquote I know I don’t have to point out the problem with this to you.  If you are not able to work it is perfectly understandable, having faced years of the above being broadcast over and over in much of our mainstream media, to be questioning whether you are now theoretically doing the wrong thing by not working.  Of course you’re not doing anything wrong.  But when I receive frustrated and fearful emails from those of you unable to work and navigating the benefits system designed to help you – and getting refused, having assessments rejected and having to wait weeks for payments – it makes me so mad because this can feel like a punishment for not being able to work.  And on top of the ‘do the right thing’ rhetoric it can be very damaging.  So.  I say to you to the following if you find yourself in this situation:

  • Don’t feel guilty.  Being ill is not your fault (no matter what anyone says)
  • Make sure you have support (friends, family, GP; anyone you feel has your back)
  • Get armed with all the information you need (see below)

This is really important: USE THE CAB (Citizen’s Advice Bureau).  I cannot stress enough how good they are.  They will tell you what benefits you can and cannot claim, will help you fill in the forms, give you legal advice and all manner of things besides.  Check out the main website for your local branch and book an appointment (you can get advice on everything from housing to health as well).

What Help Can I Get?

This will vary from person to person.  It will depend on whether you’re single or not, have children or not, have savings or not – it’s impossible to give a generic answer!  Your local Citizen’s Advice will be able to give you the right pointers but you can also use these Benefits Calculators to get a rough idea for yourself.   Here’s a quick run-down of what you may qualify for though:

  • PIP (Personal Independence Payment – taking over from Disability Living Allowance or ‘DLA’).  Valid for those aged 16-64.  Assessments take into consideration mobility and ‘daily living difficulties’ – including preparing and eating your own meals or washing and bathing. DLA is still available for children under the age of 16.
  • Attendance Allowance – a tax-free benefit for people aged 65 or over who have a disability and need someone to help look after them.
  • ESA (Employment & Support Allowance) – for those unable to work due to an illness or disability (replaces Incapacity Benefit).  This is the benefit for which you are likely to have to attend a Work Capability Assessment.
  • Disability Element for Working Tax Credit. This is available for those who are able to work 16 hours a week or more and who either claim a disability-related benefit or have been unable to work due to illness or disability for a period of time before starting back to work.
  • Housing BenefitDefinitely apply for this if you’re going to struggle with your rent. You should also get a reduction in Council Tax if you’re single or earning below a certain threshold.

All these benefits are designed to help you whilst you cannot work and support you back into work if you need that help.  The application process can be laborious, I’m not going to lie…once again, your friends at CAB can help you with application forms and making sure you give the correct information.  I also found staff at my local JobCentre Plus to be very helpful with this sort of thing too so it may be worth also popping in to see them.

So What If I’m Not Ill Enough To Claim PIP/ESA But Not Well Enough To Work Full-Time?

Ta-daaaaaaaa! Welcome to my world, friends.  I’ve fallen between these two stools for years.  I tried working full-time again (hahahahahahaaaaaaa!!).  I applied for DLA (refused).  CAB told me to apply again as I should get it (refused).  I ended up applying 4 further times (refused, refused, refused, refused). I still had to pay rent, council tax and bills.  I had to feed myself.  Not easy when you can’t work full-time and working part-time isn’t enough to live on but you also don’t qualify for ‘disability’ benefits because according to the government, having repeated brain surgeries and a lifelong chronic condition which has constant symptoms doesn’t make you ‘disabled’ enough. screams internally I remember at an assessment being asked to walk around a table twice.  Whilst I did it, I asked the assessor how my being able to walk twice around a table (no problem) had any bearing on the effects of intracranial pressure-swings (at the time a major problem).  He didn’t reply.  He also had never heard of hydrocephalus; I had to explain what it was and spell it for him.  At the time I was having bad visual distortion in my left eye due to an angiogram mishap and kept crashing into things when it hit due to temporary blindness.  No prob for the workplace apparently though!  This was when I was really unwell and shouldn’t have been working; of course they found me ‘fit to work’.  Luckily back then a GP had some sway in such decisions; mine was furious and sent a strongly-worded letter outlining the complex issues I was having and to my (huge) relief, I was pardoned and allowed to lie on the sofa until my head pressures had calmed down and the damaged nerves in my eye had healed. This didn’t cheer me up at all; I wanted to work; I was simply unable to at that time.

I know that now things are much more difficult for applicants who have chronic illness; it simply isn’t recognised by the government as being satisfactory for disability-related support in many cases and this is a huge bloody problem.  Chronic illness means you have good days when you could do some work and bad days when you can’t.  But the current system requires you to be pretty severely disabled on most days in order to qualify for help. So if you’re able to work a few days a week only, that’s it.  The fact you can’t change that situation and are stuck with it for life is disregarded. Unfortunately this is not an issue I can wholly address (or give suggestions to fix) here.  Unless Esther McVey is reading this.  In which case; stop believing this system works and sort it.

So how do you manage if this is your situation?   The best thing to do if you want to work but can’t work full-time is:

  • Find a job you can do comfortably and enjoy (part-time)
  • Get housing benefit to help with the rent (it won’t apply if you have a mortgage)
  • See if you can work 16 hours to qualify for the Disabled Element for Working Tax Credit (I was on this for a long time before I became too ‘well’ and it was a really huge help) and maybe some ESA if you can only work a few hours.
  • Finally, spend time doing things which make you happy, with people who make you happy and take each day as it comes.
  • NEVER FEEL GUILTY. Celebrate what you are able to do. Embrace each personal achievement, no matter how small.
  • And remember…..