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Where I Am With Balancing Work & Chronic Illness

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I was born with a body that would have found itself better suited to being a woman in the olden days.

Granted, only if I was a rich, white woman.

The kind where my job was to be erudite, read, swoon and occasionally go out for tea.

Unfortunately (well, I mean, really not, but you know what mean), I was born in 1988. And I have a brain. And ambitions. And live in a society where those things are appreciated and encouraged. Woohoo!

This means that I have to work. And I’m not complaining, I want to work. More than anything else.

In fact, the biggest thing that I have been struggling with recently is feeling like I am not living up to my unfulfilled potential, and no matter how hard I try, there’s nothing that I can do to overcome the limitations that my body puts on the time I can spend on achieving those things.

Over the years, I’ve learned that being honest about my health conditions upfront is really important. I’ve had to leave more jobs and internships than I can count because I would push my body too hard in an attempt to work a ‘normal’ work day (and in some cases totally a abnormal, ridiculous workday), and then suffer from a really severe flare up as a result. After that I’d literally be unable to do nothing for months on end.

Now, I’m doing way more than I ever thought I’d be able to.

I have a “if you want me, this is what you have to deal with” kind of attitude. I’m lucky that I have enough experience behind me to be able to do that (and this is a big thing that I’m working on with my charity, Project Chronic), but being open and honest about what things employers can do to help you work is one of the most important lessons I have learned over the years.

That being said, we must recognise that there are two sides to this. On the one hand, we are entitled to fair and reasonable adjustments. On the other, employers have a job that needs doing and if you’re not well enough to do it, there’s only so much that adjustments can do.

The type of work that you do and the type of company that you work for plays a huge role here. For example, when I was at Virgin Unite as their Entrepreneurship Content Manager (or Guru as I was called), I was able to work flexibly and remotely, getting Access to Work cabs in once a week for a few hours of meetings when I was up to it. We had weekly meetings where we monitored how my work was affecting my health and scale back and get more support when necessary.

I totally get that not all companies are willing or able to do this. In fact, I was at a point back then that I had still pushed myself too much and I ended up having to go on sick leave for 8 months – even with those adjustments.

I now don’t apply for jobs that I know I won’t be well enough to do, because I know that even with adjustments, anything that require being ‘in person’, having lots of set-time tasks and meetings, means that I’m able to have less control of my schedule, and that I’ll burn out really quickly.

Because of this, I haven’t applied (in the traditional sense) for a job in years – everything has pretty much been recommendation or word of mouth (which has been helpful because it means that it’s easier to explain my situation).

If I’m being totally honest, most of the work that I do these days isn’t exactly the ‘dream career’ that I thought about as a teenager. I’m not exactly made for sitting behind a computer all day. The work that I love and that I’m passionate about is the stuff that I work on in my spare time – the stuff that I feel makes an actual difference. It’s hard because right now my ability to focus on those things is significantly diminished by using my energy on paid work – and that includes writing about chronic illness. I can’t tell you how bad my writer’s block is right now – so I apologise if this is horridly incoherent!

When you have a chronic illness, your life is made up of compromises.

I have finally got to a place where I have found ways around my health – so I can work from my bed, a few half days a week, behind a computer. I get paid to write, create websites and manage social media (hire me!). These are skills that are transferrable, and really conducive to having to be sensible about how I use my time. I recognise that I’m really lucky in this sense – and that I have a family and friends that support me so I can work as much as I do.

The way I look at it now, is that my rest time is part of my working week. For every ‘on’ time I have, the ‘off’ time counts as part of my job. Unfortunately, it’s unpaid. The jobs that I take on have to be financial/time efficient, otherwise the physical payback won’t be worth the financial gain. Again, I’m lucky to be in this position, but I have worked really hard over the years to get here, pushing myself way too hard in the process.

And hey, it’s not easy. I’m not that great at sticking to those rules, even now. I generally work on a million random projects instead of resting, but it’s a start, and I do try to make sure I have whole chunks of day to rest several times a week away from client work and being contacted by them. My rest times and evenings are non-negotiable And at the very least, I close my eyes and try to take nap breaks quite regularly!

Stop. Tashy Time!

Whenever I work with someone new, I let them know from the beginning about my health problems, and that if they want to work with me that there are things that need to be taken into consideration.

Essentially, the work will get done, well, and to deadline, but how and where I work must be totally up to me. This isn’t because I’m lazy or bossy. It’s what will allow me to do the best job possible. And this is key.

Even though I have been pretty strict about this for years, I fell foul to the “I really want to impress and do this job and so when they asked me to come into the office and work a few times a week – even though we’d initially agreed remote work”, I slipped up. And I tried to “work work”.

Whoops.

I failed badly. I buggered up my back so much that i am still recovering from it months later. I got so unwell, I could barely function. I ended up having two full-on breakdowns in the office and it was only then that it seemed to be understood that I needed to work from home.

I shouldn’t have let it get to that point. But that desire to do what everyone else can. That simple act of going to an office for a few hours seems so small. But it’s not.

Because here’s the thing. When you have control over the things that you do in the day, it’s amazing what a difference it makes to your ability to do things. It even surprises me. I could work all day on my computer from home, but send me to an office and by the time I’m there, my fatigue and pain levels would be so high, I might as well have not worked that day and it will knock me out for a week.

Finding the confidence to say “no” is so difficult. And that can only come with time and practice, and knowing that you can do as good a job as anyone else, you just need to work in a slightly different way.

It’s part of the whole ‘accepting’ your chronic illness but not giving into it thing. There will be times when your body flares so much you can’t work – I get that. But finding ways to keep your life as consistent and controlled as possible may help to stop these from becoming more frequent.

It takes a long time to figure this stuff out, and there’s still (sadly) very little understanding and opportunities specifically targeted as flexible enough for people with chronic conditions. Keep writing, keep shouting, keep sharing your experiences. Things will change.


You can find the Sick Girls’ Guide for family and friends, as well as the Sick Girls’ Guide to diagnosis here: Please check them out and support my work :)

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9 Comments

9 Comments on Where I Am With Balancing Work & Chronic Illness

  1. Lisa
    December 14, 2016 at 4:06 pm (5 months ago)

    Such a great update. Thank you for sharing yourself as always in your awesome blog- your experience is so similar that I always feel so much less alone in this crappy frustrating situation.

    Reply
    • Natasha Lipman
      December 14, 2016 at 6:27 pm (5 months ago)

      Thank you so much for your kind words, Lisa!

      Reply
  2. Rita Perry
    December 14, 2016 at 10:20 pm (5 months ago)

    I have missed you and your blog! I am so pleased you are managing paid work and are still as inspirational to us that haven’t figured out our own juggling act in life. Have a blessed festive season and happy, healthier new year.

    Reply
    • Natasha Lipman
      December 15, 2016 at 10:12 am (5 months ago)

      Aww thank you, Rita! Your comment made me smile – it means a lot. I hope you figure some things out soon – and have a happy and healthier new year, too!

      Reply
  3. Silvia Logan
    December 14, 2016 at 10:57 pm (5 months ago)

    Natasha, I am so glad that you are managing paid work and you are doing well. I understand very well that it is uncomfortable to suffer pain all the time, but you are tough and you are eager to do it. Thanks for sharing this blog, Natasha!

    Reply
  4. abi
    December 15, 2016 at 10:10 am (5 months ago)

    Well done you!! You are doing so well and working it all out for the rest of us!! thank you :O)
    I had managed to work for a few years, but eventually let work manage me, not the other way round. i ran my own business so found it hard to say no to jobs. Then I had a massive flare in September and have been unable to work, except the most basic things. Fatigue and brain fog make it impossible – i can push through anything else…. so i have been desperately palming off work since… I did one meeting.. and had to lie on the floor for the second half (great!!).
    Now i have to think again. Not sure my old job (which I loved) will fit the bill. So maybe 2017 will bring a new and exciting way forward?? Your tips and wise words, as usual, really help so i know where to start.

    THank you and Happy Christmas :O)

    Abi

    Reply
    • Natasha Lipman
      December 15, 2016 at 10:15 am (5 months ago)

      Thank you so much, Abi!

      I totally understand how that goes – it’s honestly the thing that I struggled with balancing the most. Advising friends against that (yelling at them, more like!) was what helped me recognise that pattern in myself. I literally do like one meeting a month and it usually ends up the same way.

      I hope you find something new and exciting that is health-friendly! You seem to have the motivation and honestly, from the people I’ve met, that’s half the battle :) Start slow, you’ll get there. Slow and small (even if it sounds stupid and boring and frustrating) is better than nothing that comes after a flare, right?!

      Merry Christmas, and gentle hugs xx

      Reply
  5. Jo GreenLightNutrition
    January 4, 2017 at 7:05 am (4 months ago)

    Hi Natasha,
    I stumbled across your blog this morning and must day I find reading it pretty inspirational.
    I have suffered for most of the past decade with chronic back pain where all my muscles in my back and shoulders go into spasm and then stay in spasm. Waking up in the morning I’m in pain, and by the time I’ve finished work I’m in so much pain I can’t stand to even make a cup of tea. I am having treatment privately with Cione’s Tim King, so am hopeful there’s a light at the end of the tunnel for me.
    Working as a Dietitian in the NHS is a demanding role as I’m on my feet all day on the wards, and it’s been a long struggle getting the support I’ve needed. I’m working reduced hours which is helping (but not much to be honest!) but I haven’t found the courage to cut back any more due to financial constraints.
    I guess I’m reminded by your blog that it could be worse (sorry to make the comparison but it has made me reflect on my situation reading about yours), but more importantly, that no matter how bad it is it, is possible to work doing something you enjoy even if it wasn’t what you originally planned! So thank you for that early morning message!
    Wishing you well, Jo x

    Reply

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