“We Don’t Live to Work, We Work to Live”

I’ve touched on the topic of working or maintaining a career with chronic illness(es) before, and as much as I try to follow my own advice, it’s hard to stick at. And why does it always take something major or serious for us (and maybe our employers/colleagues) to finally understand and take action?

It’s a weird one, I will admit, but sometimes I find it really hard to actually put myself first and listen to what my body needs. This is coming to you after a major major flare that started last weekend and has dragged on and on, rising and falling, up until today (and I suspect it isn’t going to stop any time soon).

All of last week, I went into work despite being in severe pain. I managed to get some relief on a Wednesday afternoon where I was given the OK to work from home (and also given the OK to do this on bad days as long as staffing in the department is good … small victories, eh?) but by Friday I was struggling to even stand up let alone see patients. On that Friday, something inside me switched and I knew I had to be careful and actually take opportunities to feel better. And I am really proud of myself because that Friday, I actually spoke to my team who made adjustments to next week to enable me to either not come in or come in for half days where needed.

So what stops us (or really, me) from continuing to work when my body is screaming out for me to stop?

  • Knowing that I have other responsibilities (e.g. meetings, training, students)
  • Already being aware how busy and/or short staffed we are – me being off will only make it worse
  • Guilt, and that feeling of “oh Lauren’s off again…”
  • The general lack of understanding and not wanting to explain it all – again

Really, you are no use to your employer if you’re not fighting fit – you won’t be performing at your best, you might miss things and despite work being that occasional good distraction it can prevent you from being able to take any pain relief or other medications. The worst thing is that your effort might not even be appreciated. Oh, and if you’re like me you’ll instantly regret making that effort to go in.

So how can we get over those aforementioned barriers and actually look after ourselves? It’s hard, I know, and it’s something that I go round and round in circles about. I’ve learnt these circles often start with having a glimmer of understanding available to me, but end with it being taken away. And despite all my best efforts to get people to understand, I’ve definitely come to the conclusion that a) people will only hear/read what they want to hear/read, and b) unless it is a visible illness, I have no hope – doesn’t matter how descriptive I am with my pain or symptoms or how much information I provide people, it’ll be forgotten about the next time they see me because I look “perfectly fine and normal”.

Here are some tips and things I am starting to use to manage those barriers

Without making it look like you’re going to be off the next day, try and prepare/plan so that if you’re not in the next day, the workload can be shared or left until you’re next in.

Maybe not always easy depending on the job you have, but on days when I’m in work, I’ll get as much done as possible and try and be ahead of the game so that there is less to do tomorrow. If I know that the chance of me being in the next day is slim, I will check things like our rota, patient caseload and meetings so I can organise it the best I can.

Talk to someone about how you’re feeling and whether or not you should go in.

For me, this person is my husband. He lives with me, sees me in pain and knows when I am not well and need to rest. Sometimes, it’ll be my husband who suggests I stay at home, which helps because it’s almost like someone else making the decision for you. But I find talking about how I feel, what medication I have taken and what work will be like the next day gives me a better view of what tomorrow will be like and if I can manage it.

See if there is anyway that your employer can let you work from home on days where you are not feeling so good.

Unfortunately this is not available for everyone and even in my job I am extremely lucky to have this opportunity. It came about only recently, and kinda more related to being pregnant, but knowing I have that option really takes the pressure off! Obviously, you don’t want to abuse the system – what I’ve done is written a list of days where it would be safe (in terms of staffing and patients) for me to be working from home, but my goal is always to go in. Having this list makes me feel I’ve got backup if needed.

Utilise medication as best as you can so you can get the most out of it.

Might be a bit obvious, but if you’re someone like me where pain is the main problem, taking even the basic form of pain relief regularly can provide great benefit. For example, taking paracetamol regularly (as per instructions, please!) gives your body a constant level of low-dose pain relief, meaning that it helps with breakthrough pain and preventing pain levels from spiking and dipping. This applies for days when you’re at work and days when you’re not.

Try and forget any other responsibilities.

Easier said than done, I know, but you know what? Those meetings will go on without you (and if you were the one leading it, then it can be rearranged). Your training can be booked again. And those students will have the rest of the team helping them for that day. It’s not the end of the world. It often takes my husband to remind me of this to get me to put myself first. Again, how good will you be at your meeting/training/students etc if you’re struggling to function because you’re not well? At the end of the day, if those responsibilities are too much to take on right down due to a period of ill-health, they can be allocated to someone else (if you’re happy with that, that is).

“My sick days are just stacking up and up…”

In terms of sick days, one thing to remember is that you cannot be fired from a job simply because you have been off frequently. There is a process to these things. Here in the UK, what often happens is if your employer is concerned about the number of sickness days you are having, you are taken through a three-tiered system. For example, they might have a set number of sick days over a set period of time that triggers the first phase which is often simply a discussion. This is a good opportunity to be honest about any health conditions you may have and the reasons you’ve been off, often prompting employers to refer employees to occupational health and/or make adjustments where necessary. You’ll also be reminded of what triggers the second phase, which is usually another set number of sick days over a different period of time. The second phase can be a bit more formal, may have more people at the meeting, but is again a good chance to talk about your health and if any further adjustments are needed. The third stage is the most formal, may or may not be seen as a “disciplinary” (company dependent) and is often more serious regarding your future at the company. But worry not – its extremely hard or a company to fire someone due to sickness, especially if they have long-term health conditions. The three-tiered system is designed to catch out those who take the mick (e.g. being “sick” after Bank Holiday or annual leave all the time, or always on the same day), but it is a bit flawed – often employees are better off taking a chunk of time off sick rather than single days, as this is less likely to trigger anything. If you are facing disciplinary action or loosing your job because of sickness, I strongly encourage you to speak to your union as they can advise whether you can take work to a tribunal and fight your corner, especially if work have not been supportive. Also remember that under the Equality Act and Disability Act, your employer cannot just let you go. NOTE: pregnancy-related sickness is not counted at all in sickness, as in it won’t trigger anything.

If you are starting a new job, or even been in your current job for a long time, I would think about declaring any health issues when you start.

No, this is not so they won’t choose you over a “healthy” candidate (again, they can’t do this), its so work can be aware and offer you support straight away. Most employers after offering the job and you accepting it, will at some point before your first day or in the few days you start with them, ask you to complete a form about next of kin, health and disability matters. Of course, you do not have to declare anything, and if you do declare something, you don’t have to go into detail at all – it’s not a legal requirement that they know. And what you do declare sometimes is only known by Human Resources, unless you give permission for your line manager to know. Even if you’ve been employed at the same place for years, sometimes having a sit down with your manager about why you’ve been off or what you’re having to deal with can be rewarding. It’s not all roses though, as through my personal experience and those of the Endo Bunny community, some employers can be incredibly resistant and not really care (and if this is the case you definitely should speak to your union!), but the vast majority are helpful to some degree. The benefits can be;

  • a general understanding of your health and/or conditions which can be helpful on days where you are not feeling well, need to ask for time off for appointments or are phoning in sick
  • flexibility in the work place, such as altered hours or time off for appointments
  • adaptability in the work place, like altered or lightened duties and providing assistance when needed
  • referral to occupational health (if your company has a department) – again, can be a bit hit and miss but they are generally the experts in advising what you can/can’t do at work. If your company doesn’t have occupational health, a doctors or consultant letter can be just as beneficial
  • if you decide to tell your colleagues or ask your line manager to, you may find having their support really helpful as extra people to talk to and ask for help at times

Remember that you should not feel guilty about being off – YOU are most important and how do your employers expect you to do your best when you’re probably feeling your worst?

This is a tough one, I agree, and I really should follow my own advice on this one, but you cannot control your health and therefore should not feel guilty about it. You didn’t ask to pick up a stomach bug or go out of your way to catch a cold, and you certainly did not choose to have any chronic illness(es), so you should not be made to feel guilty or a burden. It can take some time to overcome these feelings, but you gotta remember that you are important and only you can take care of yourself. Self-care is not a luxury, it is a necessity and a day of self-care will often make such a positive improvement.

If anyone has any other thoughts or suggestions or even advice they would like to share on this topic, then drop a comment below! Remember, your health comes first. Always.

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