Sunday night. 0700 alarm set. Snooze a couple of times come the morning before getting yourself up, showered, fed and ready for work.
This is the morning routine of most people I know.
It is NOT my morning routine.
So I am going to tell you why I wake up feeling like I’ve already run a marathon and why I finish the day feeling like I’ve been hit by a truck, so sit comfortably and let me set the scene…
‘Twas the Year 2000
20 years ago I was a footloose and fancy-free 8-year-old whose biggest worry was my mum’s reaction to me getting mud on my school uniform. That is until a hospital admission in the summer completely turned my sparkly, childish world upside down.
It took every test you can imagine, 2 hospitals, 5 doctors, 2 incorrect diagnoses, 1 blood transfusion and a near death experience before getting a diagnosis for the stiff joints, fevers, rashes, water on the lungs and weight loss I had been going through during that initial 5-week hospital stay.
Systemic Onset Juvenile Idiopathic Arthritis (or, as the cool kids call it – Systemic JIA).
What a mouthful. I know what many people are thinking though: “you can’t have arthritis at 8, you’re far too young!!” Well, apparently not.
And it changed EVERYTHING. Steroids made me put on weight to the point I was unrecognisable, drugs caused all sorts of issues from bits of my hair falling out, mouth ulcers through to permanent nausea.
But still, my parents made sure I had the best childhood I could have wished for, even if the majority was spent yo-yoing to and from Alder Hey Children’s Hospital (which was a considerable drive from the rural North Lancashire countryside).
The year 2011
So. Here we are. I’ve reached ‘adult’ status (bravo me!!) and I’ve actually been pretty well. So now I’m living my best life at university. Definitely drinking responsibly and definitely attending 100% of my lectures. Obviously.
I had a really bad relapse during the first year of my Biomedicine degree – I distinctly remember my dad taking me out of hospital on day release and driving me 150 miles to Newcastle so I could sit an exam, before driving the same miles back and returning me to my hospital bed.. multiple times. What a guy!!
Heading back to uni in the September was a struggle but I stuck to a treatment plan and managed to remain relatively symptom-free after this. So after another 2 years of studying I was 21 and going through the same HUGE worry as all of my peers, which should have been “I need to find a job” but was actually “How am I ever going to cope having to move back in with mum and dad!? EURGH!!”
It wasn’t all bad though, I started my career in technical recruitment and have never looked back!! Actually that’s a lie, I absolutely questioned my career choice (at least once) 😊 but it is something I have definitely grown to love.
The year 2019
So this is the important part. This is where it got tough. Another relapse. Another hospital stay. Another diagnosis. But this time it had the added twist of me being a full-time working adult with a demanding job that required me to be constantly on the ball. At all times.
This time it really affected me. And my career. And my confidence.
Things were so bad I had to leave one job. Then I lost another.
The pain and fatigue were so bad that I didn’t even have the energy to job hunt. Some days were terrible to the point where I couldn’t get out of bed. Yeah, having a chronic illness as an adult SUCKS. And I mean REALLY sucks.
But having 2, well THAT can be absolutely s**t!!
It wasn’t all bad though, I have found a really supportive company to work for, my colleagues have become friends and are slowly becoming an extended, quirky (and at times, gloriously odd) extension of my family.
They accept my Systemic JIA & Psoriatic Arthritis. They accept all the pain, fatigue, hospital appointments, physio and bad days that it brings with no questioning or doubt. Whether they could ever truly understand it (and I’m unsure anybody that doesn’t live with a chronic illness actually could) is completely irrelevant, they just wholeheartedly accept and support me.
The Year 2020 & Beyond
Working with a chronic illness is HARD. It can mean that you don’t get as much done in a day as your colleagues, or you have to work harder and expend more of your dwindling energy levels to get the same amount done. Then you go home feeling like you’ve been hit by a lorry!!
There is so much workplace pressure on people to ‘push their limits’ from a personal development perspective – but this can have really a really negative effect on those with a chronic illness. I’ve had to learn to see my energy as being as precious as my time to ensure that I don’t burn out before the end of the day, which is massively frustrating being a 27-year-old that wants to do more, but simply cannot sometimes.
The last 8 months have been really interesting for me. I have learned so much about myself, managing the diseases I have, how important flexibility and adaptation is at work and to always put my health first.
Not only that but I am now beginning to see my illnesses as assets – talking openly with my colleagues means I feel less pressure on me if I am under the weather. It has allowed me to meet some amazing disabled people with incredible stories and it’s making me much more confident at work and home.
The biggest piece of advice I have for those working with a chronic illness is to have reverence for yourself, what you have been through, are going through and how hard you are working. Also, communicate with your colleagues and managers – you’ll probably be surprised at their level of compassion and how much they will want to support you.
And for those of you that work alongside someone with such a disease and don’t understand – I promise you they aren’t lazy or incompetent, they are actually working harder than you realise. Go and talk to them, I can guarantee their story will be amazing 😊
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(Any opinions expressed in this blog are not necessarily shared by Arthur’s Place. Nothing that you read in this blog constitutes medical advice.)