Don’t Confuse My Inability to Work with Not Wanting to Work

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“It must be nice to sit around all day,”

“Bet you have all the free time in the world,”

“I’d give anything not to work,”

“You’re so lucky to not have to work,”

These are just a snippet of the comments that have been made when you ask pretty much anyone from the chronic illness community how people reacted about them either being temporarily off work, on altered duties or hours, or unable to work.  And I guess it doesn’t just apply to work – some of us are unable to participate in a lot of things that are considered normal, such as housework or socialising.

The thing that I often stress to people is that I want to work, I enjoy work and I think if I had to give it up altogether, I’d be lost.  I’ve said it so many times before, but work is a welcome distraction on days where I can manage to go in.

I work full-time as a Physiotherapist in an NHS and private hospital.  That’s 5 long days full to the brim of patients who need treating, a whole heap of manual handling and a lot of hands-on treatment.  I’ve been signed off of work quite a few times – mainly post-surgery – but the most prevalent being when I was signed off with M.E./CFS and I underwent a phased return to work that took months.  And actually, that was and still is my proudest moment – being able to return to full-time work.

I also  have recently got a new job which has reduced my heavy clinical days down to just 2 days, the other 3 I spend working in an office.  This was an opportunity that couldn’t have come at a better time!  Clearly, one job is lighter and less physical than the other, but just because I spend 3 out of 5 days not being clinical, busy and heavy, doesn’t mean it’s not hard.

I consider myself lucky that the following;

  1. Two amazing and supportive line managers, who always want to put my best interests first
  2. A company that has an easily accessible occupational health service, which is actually helpful
  3. Colleagues who actually take the time to understand my conditions and do anything they possibly can to help me
  4. The ability to do lighter tasks or different jobs as and when needed
  5. It’s flexible

I actually think that my current employer is the best I’ve had (but I can assure you that it does have its flaws) and am grateful how everything has sort of seemed to fall into place.  But there are still people out there who pass comments despite even knowing what I actually do or what it is I am struggling with, which makes it just that little bit harder to even bother in the first place.

Typically, my day starts before 8am and before I’ve even had the chance to sit down and look at the patient list, there will be a patient at the door to our department- not one day seems to go as it’s been planned and I find we are forever running around trying to meet the demand.  Then there is the ward round, where I’ll be standing more than walking for a while, sometimes up to 90 minutes, and standing for more than 20-odd minutes starts to hurt.  There will be lots of bending, lifting, supporting and manual handling which is tricky when any movement of your torso makes it feel like you’ve torn yourself in too.

Despite this and the pain it causes me, if I was to stop working, I think I’d lose my livelihood.  I think this is why I find it hard to take sick days and force myself to go in when I’m really not well.  So when I am off work, it’s not enjoyable and I’m not “lucky”.

At the moment, even though I am clinical 2 days a week, I’m hardly doing just that – I’m mainly leading clinics that don’t involve a lot of physical work, and I’m doing more admin and managerial work.  The other staff members have started to notice how I’m not on the ward any more, and it’s hard to explain why so I give a bit of a wishy-washy answer.  I don’t think people would really get it without me having to go into details I don’t want them to know.

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When I think back to when I was signed off work and doing a phased return, there were quite a few times when we didn’t think I’d ever get back to being full-time, and even though I have done (and I’m so proud of that), it makes me wonder how others must feel when they are unable to do this or have to give up work altogether.  I felt completely lost, frustrated and a bit of a failure, not to mention the 3 years I’d spent training to be something I desired.  I had whole career plans mapped out in front of me, and although they have changed now, I’ve still achieved some pretty amazing things.

If you are unable to work because of your health, you shouldn’t feel guilty.  Just because you aren’t working doesn’t mean you don’t want to.  I’ve met plenty of people throughout my diagnostic journey who would do anything to get back to work again, and often it is those people who are judged the most.  The sad thing is, I know what that is like because I’ve seen the looks and had people comment when I’ve been off work – even if it was for something completely understandable like surgery.

Trying to maintain a career or hold down a job can be really tricky when your health is unreliable.  Employers legally do not have to allow for appointments – some may ask you to take annual leave or simply go unpaid, rather than just pay you for the 30 minutes or so you’ll be absent.  Some employers don’t even have any company sick pay, meaning time off following operations or treatments is hard – I’ve know people not go ahead with surgery simply because of what the time off would do to their financial situation.  I find that awful – how can an employer make a person feel like that?

I’ve also known plenty of people lose their jobs because of their health – not because of the condition itself but because of things like accumulation of sick days, loss of hours or the need for lots of time off for appointments etc.  And whilst no one can fire you because of your health condition (if you’re going through something like this, you must look at The Disability Act, because you may find it helps), it’s a bit of a grey area if it’s related to being unreliable.

The one thing I want to get across to everyone I know, is that working is hard.  I don’t mean because of it eating into my social life (which doesn’t really exist), I mean it literally causes me pain.  So when I have days off, it’s because I really need it.  Thinking I’m exaggerating?  Yesterday evening I came home from work early because the pain had been eating away at me all day, and I was at work when something inside me “popped” again.  I spent the rest of the evening covered in a burning hot hot water bottle, on the sofa and taking morphine.  But as I woke up feeling *slightly* better, I headed into work.  Was it the right decision?  It never is because work is never straightforward, and the pain was just ramping up and up, but was it a good decision?  Yes, I think so, because I was distracted.  And trust me, there is no better distraction than caring for your patients.

So if you’re reading this and are going through something similar, be it struggling to hold down a job or not being able to work, your employment status should not matter to anyone but you.  And I know it is easier said than done, but who cares what anyone else thinks?  The most important thing is that you are doing what is right for you and your body, and trust me, something good will come eventually.

 

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