Working and chronic illness

For the past three years since I started on this whole surgery journey and things took such a toll, I have been self employed. I have been a freelance writer that’s funded the growth of this blog. I’ve also been extremely supported by my husband, both emotionally and financially. As a self employed person, when you don’t work, you don’t get paid, therefore for the 5 surgeries, subsequent recoveries and hospital stays, without the support of Timm, we couldn’t have afforded to live. 

I applied for PIP, asking for support and was flatly refused. The process was so stressful that I couldn’t even bring myself to appeal. It was really difficult, embarrassing and pretty humiliating, so to then get the response that I scored ZERO was heartbreaking.  That’s right, the PIP folk say I have no extra needs than anyone else. I felt like emptying my bag on their desk and asking them what needs they then had…

The fact I have a life long chronic illness meant nothing, the pain, joint problems, fatigue, anxiety, ostomy, dependency on my husband, the raw bleeding skin, ulcers, the leaks, the planning it takes to leave the house, the dietary issues, the exhaustion, the medication, all of it meant nothing and they said I wasn’t entitled to a thing.  This meant money has been tight and till very recently, I just didn’t feel capable of taking on any other work. 

But now I have a new job for Scope as the digital community officer and I LOVE IT! But the reality is that I can only do this job because they support me in working from home.  So how’s it going? Well, I love the job! Working full time is a huge shock to the system and it’s taking its toll on me. 

I finish work and I’m so thoroughly shattered that I’m in bed by 7pm!  On bad days (which has been every day this week) I have used my lunch hour to sleep.  I’m still figuring it all out but I’m sure I will get there. Timm has had to take up a much bigger role in childcare and running the house as I simply can’t do it all. 

It’s a lot to take on but I’m happy I have done it, I almost feel like this job is part of my recovery process. It is helping my self esteem and confidence massively and reducing my feelings of guilt that have plagued me for years of illness where I’ve felt I had to rely almost entirely on Timm. 

Working from home is ideal for me, I couldn’t cope with working in an office. I still have leaks and stoma issues and the privacy of working from home means the embarrassment factor is reduced hugely and the logistics of dealing my bag is so much easier here.  It also means that on a very bad day I don’t need to worry too much about my physical appearance. When I’m struggling, it’s hard enough just to get up in the morning let alone having to make myself presentable for others! 

Emotionally, it’s been a rollercoaster but I’m nearly  a month in and I’m feeling lots more confident.  My anxiety feels more under control and my self esteem is really boosted. After so long of needing my husband to provide for us all, it feels amazing to be a breadwinner! 

This is obviously only my experience, everyone is different and I don’t judge people who don’t or can’t work or work out of the home.  I feel really lucky in finding this opportunity that works for me but I know working from home just isn’t an option for some people. 

So my top tips for working with chronic illness? This is what has worked for me:

Seek out opportunities, they are out there even if they’re few and far between and it might be a struggle. 

Ask for support whilst looking for work. The government website is a good place to start. You could try talking to a Disability Employment Officer

Once you have a job, speak to your employer about your needs.  Whatever your physical or learning disability, you have a right to equality, fairness, respect and understanding at your workplace  under the Equality Act 2010. 

Listen to your body, what does it need? Right now I need rest and comfort and so I have a hot water bottle to hand, plenty of fluids and I do power nap at lunch which sets me up for a great afternoon working. Only you know what you need. 

You can’t do everything.  I did the lions share of housework, but now I work full time, I ask for help from my husband and kids and I got a cleaner. Yes, a cleaner is a luxury, but it is the best £20 a week I spend as it reduces my work load and stress levels. I know it’s not affordable for everyone but I would rather go without other luxuries and use that money for something that really helps me out. 

Prioritise your time. Adding work into your life means other things will fall by the wayside.  Prioritise the important stuff. 

Be open with your employer and let them know your limitations. Offer solutions to the issues you may face and ask for help. 

Rest when you need to. I have fatigue, so I know that when I’m not working, rest is a fuel for my health. 

If you don’t know it, search it. We all have access to all the information in the world! There’s a ton of info and support out there, if you have thought of the question, it’s likely that others have too. Use the internet for research and help. 

If you’re interested in my new role, you can take a look at the Scope Community.  Register and join in on hundreds of posts, questions and comments and a community of disabled people and the families and carers of disabled people now! 
Sam x 

6 replies
  1. Saskia Madison
    Saskia Madison says:

    I attempted to go back to work full time three years ago. I was SO excited to again have something I could call my own and have people respect me for my mind and ability….not just how great a mom or housecleaner I was! We don’t have the same degree of illness, however my Colitis flared so bad that I could not even sit through a meeting. It was humiliating to have to even begin the conversation with my boss and explain that once I active, there was only so much control I have over this beast. I now do side jobs (training, exercise) that do not require a large time commitment and per diem opportunities. Good luck! You’ve done the most important part, asking for help!

    Reply
  2. Kim
    Kim says:

    Hi Sam, my name is Kim. I don’t suffer what you do, but I do have a chronic illness- COPD. Face many of the same challenges and also work remotely from home. Blown away by your blog and can see why you’re an inspiration to many! I’ve actually written on my own blog (www.lungevity.blog) surrounding the issues of discrimination, and referenced your campaign #MoreThanMeetsTheEye. You really do capture experiences and how they really are for someone suffering and as I read your stories, lots of head-nodding!
    Super strong and inspiring person, glad you’ve been able to find something that works for you 🙂

    Reply

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