chronic fatigue · chronic illness · endometriosis · fibromyalgia · Job · Personal · Real Life · spoonie · work

The stresses of working full time with a chronic illness

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I should not be sitting in the library on my birthday near tears over numerous things that have caused this. And one of those is working whilst chronically ill related, and others are just indirectly linked somewhat because growing up with chronic illnesses has made me feel inadequate. It’s made me feel like I’m less than. I’m caught between constantly having to prove these illnesses and feeling this overwhelming need to push myself harder than most in order to prove that I’m a worthwhile human being.

It sucks.

I’m literally two seconds away from not going home for Christmas because it’s too expensive, I’m not being paid my full wage this month and I’ve only just found out and because I know I need time out for medical appointments, and I already have one holiday day this month I can’t ask for the 27th off – which would make it a lot cheaper and less likely to put me in a flare.

And that’s just the half of the near tears. I also have a GP appointment during work hours next week which I need to tell my deputy line manager about. And normally I’d arrange out of work for GP because that’s self motivated and self started but this is about getting my medication which I absolutely need by Tuesday. I’ve already reduced my dose in order to do that and I can’t reduce it any further. I moved up north to do this job, so I’m with a new GP. The GP is being pedantic and won’t issue my repeats until they’ve seen me. So I try to negotiate outside of working hours but without me running out of meds beyond what is manageable and I can’t. This means that I have an appointment next Tuesday afternoon and have to leave work at 3:45 (if I get an uber) – which although I really can’t afford I’m gonna have to.

So I can’t be nice and fluffy about it. Just asking – or saying more like gives me so much anxiety. Especially when I’ve been on reduced hours these past couple of weeks and what if someone asks why it couldn’t have been done then. I mean I have the answers. I honestly didn’t realise the GP would have to see me until today. They’re repeats after all and next Tuesday is literally the earliest day that could see me. It’s not my fault, but I feel like it is.

I feel like it creates a bad impression of myself and that comparably I’m making excuses not to be in work.

Which I am absolutely not. I will happily make up the hours by coming in an hour early or whatever configuration they would like. But because organisation policy says to make appointments outside of work time I feel like it’ll be looked down upon and that it may even impact me passing probation.

The entire situation is ridiculous. And I know it’s not just me who feels like this. There’s so many others who feel that because they’re chronically ill they have to try 10X harder to be liked and respected. I think that’s the problem with how society views disability as a whole and how it’s represented in mainstream media.

You’re either an inspiration because despite your disability you’ve done groundbreakingly amazing things or your just lazy and not trying enough. I don’t want to be lumped in the not trying enough pot so I try too hard. And it’s so hard to stop that. But sometimes enough is enough. At the point I NEED my medication.  Being in so much pain your in tears is  nasty – which is why I need the gabapentin, that and because it is potentially addictive dependency is a thing. I know if I forget to take it for too long I get nauseous and then it gets to the point where I literally can’t get off the bathroom floor.

I would like to highlight that dependency and addiction are two different things. I class addiction as more of a mental and psychological dependency – generally because of positive side effects the drug has that are unrelated to what it is for. Dependency however is more of a physiological reaction from your body getting used to being something for so long. Dependency is why with some drugs you have to taper down – in order to avoid debilitating withdrawal. This isn’t necessarily because your addicted. It’s literally standard protocol for some prescription medications. 

The reason I can work is because of the meds I’m on thus I need to get the meds on time. I have bills to pay. I have adult responsibilities.

I want to write this post to send a message that A) Doctors please please be more flexible. I don’t know what the solution is here. I don’t know how the NHS can resolve the issues with getting a medical appointment at a convenient times without GPs lives being even more about work than it already is. Maybe it’s making telephone consultations for a prescription review standard common practice. Hey maybe even facetime.

B) Employers please realise that us chronically ill people are some of the most anxious, stressed out and concerned about our reputation people you will ever manage. Being chronically ill in itself is a full time job. We are also some of the most hardworking and dedicated people. Even if you also managed x who had the same condition and you think they were better, missed less work, went to more social events it doesn’t mean we are trying less than x. It just means these conditions are highly variable and we all have different levels of responsibility outside of work.

C) If you are chronically ill and working full time, even if your conditions are under more control than mine are and you for all purposes feel well most of the time you are amazing. Stay strong and all of that cheesy stuff! Please don’t ever feel bad for putting your health first. I know we’re all quite bad at that anyway. I push myself to work when most people absolutely wouldn’t do. I even do this thing of overcompensating and acting extra bubbly at work on a worse day. And find that’s my choice, that’s what I need to do. But I shouldn’t feel bad for prioritising appointments over an hour of work if I can’t negotiate them out of work within a reasonable time scale. (That time scale is different for each appointment too!) Remember the Equality Act 2010 and the reasonable adjustments. Now doesn’t mean you’ll get everything. I can’t get flexible working until I’ve passed probation and that would really help remove this medical appointment stress but such is life. But it does mean that your employer should allow you to take that time for medical appointments, ideally without making it up. (because there are difficulties with that for people with a condition like ME.). Now I always will offer to make it up but that’s just me.

Anyway. This was a lot longer than I wanted it to be. But hoping someone else can relate and that we have all learnt something even if it’s to just not be so hard on yourself.

 

2 thoughts on “The stresses of working full time with a chronic illness

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