Lupus and Facing the World of Work

I wrote about my experience undertaking a postgraduate degree not long after I was diagnosed with lupus. With the degree in the bag, I have just completed an internship – my first experience of full time work since my diagnosis forced me to quit my teaching job. Of course, 5 months as an intern does not equate to the experience of many who have worked for years with chronic illness, but whilst it is fresh in my head, I thought I would jot down tips for anyone about to (re)enter the world of work:

Tell your supervisors

I opted to not tell my supervisors during this internship. Despite telling my university tutors, which really helped when my sickness was threatening my grades, for some reason I decided not to tell the people I would be working for. Maybe it was out of fear of prejudice – I did not want my first impression to be “I’m sick, I might need time off” – even though this was true. I knew people would be understanding, but as reactions to hearing about lupus can be anything from supportive to “STAY AWAY DEMON!”, it makes you hesitate to disclose. But after speaking with a friend who lives with diabetes, she recommended that I tell supervisors in the future and that there is rarely any judgement. So for my next internship/job: my supervisor will know. After all, it is better they know in advance than to suddenly hear: “I can’t come into work today because I’m in the hospital”!

Prep meals when you have the energy

When you have a little energy, make your future tired self grateful by prepping your work lunches to grab and go. Also freeze your prepped dinners to heat up in the evening when after a long day the last thing you can think about is cooking from scratch. Have the ingredients for easy to prepare meals when you’re in between (such as a stir fry – always a winner!). But also don’t be too hard on yourself if you succumb and buy a ready made sandwich or meal.

Don’t overwork yourself in your spare time

As tempting as it can be to fill your free time with other activities – doing too much can overwork you more than your day job. Learn to pace yourself, and to say no! If you need an evening snoozing with Netflix on in the background, rather than going to the gym or volunteering or taking an evening class or grabbing drinks – don’t guilt trip yourself for doing so.

Wear comfortable work clothes

Remember that story of the woman who was sent home for not wearing heels? If you have a boss like that, complain until they are given the boot. If you’re spending 9-5 or more in an outfit, even if it has to be smart, make sure it is comfy and suits your needs. Heels aren’t necessary to do your job. And there are plenty of loose fitting but still smart clothes to rock up to work in.

Get up and stretch

If you are sat at a desk all day, it is important to move every so often – I always did when I felt my joints aching and stiffening. Office work can leave anyone with back problems etc, so when you’re a little more fragile than the average person – not only move around and stretch your legs but if needed look into buying supportive items that might help you when you’re working hard.

Remember you are human

And not a superhuman (but still super!). Any bad day, any time you struggle with workload or to remember important details – tomorrow is always a new day.

2 thoughts on “Lupus and Facing the World of Work

  1. I just started my first 9-5 job since being diagnosed as well! Lucky for me the dress code is super casual, I can get away with leggings or a yoga skirt on bad days. And I can work from home if I absolutely need to. Thought my supervisors don’t seem to ‘understand’ my illness, the rash tends to give away flare days and they don’t get as upset when I take longer to do tasks. (We also have a play room with bean bags and I take naps sometimes too…but shhhhh! Don’t tell anyone!) #softwarecompany I have several hacks to get through work too, I’m currently working on a similar post! LOL

    1. That seems pretty good! I find even if people don’t fully understand, if they just “get it” slightly it can mean a lot. Haha wish I had a secret nap spot….looking forward to reading the article!

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