When you have endometriosis (or any chronic illness) every day is like a marathon because of your limited stamina and your frequent pain. One of the hardest juggling acts becomes trying to or continuing to work.
By it’s nature work isn’t meant to be simple, but it becomes particularly difficult to manage when you’re having to contend with:
As a result many people who are frequently ill because of endometriosis are happy just to have the opportunity and ability to work. A job becomes an aspiration to those who are chronically ill – a complete privilege.
When you have a long-term illness you start to view work in a totally different way to those who are fit and well.
Working means giving yourself a certain amount of independence and freedom. An income to spend as you wish, and a schedule to work towards.
Endometriosis tries to deny us these two, very important aspects of life. By hampering our ability to work to a set schedule, and reducing the amount of healthy, happy days we are able to work. This in turn isolates us from our other working colleagues (and the wider world) by preventing us from opportunities to socialise normally.
Working isn’t the be all and end all of life though, but it’s a reality for most of us who are able enough to keep working.
How we manage
Working life has to be taken day by day. Week by week. Many of us manage by just “trying to get through the next day”. Breaking our working week down into sections and manageable portions.
While working with pain and fatigue we often find ourselves thinking:
“If I can just get out of bed right now.”
“If I can just make it to lunch.”
It’s important to break the day down into sections you can manage. A big part of working with endometriosis is knowing the limits of what you can personally handle. This covers everything from:
- Your pain threshold
- Your energy level
- Likely activity for the day
- The type of work you do
- How long your working activity is likely to be
It’s important not to push yourself at work too hard – you should only attempt “going the extra mile” if you feel your body is up to it. This means not just weighing up how you feel now, but the likely backlash you may get from your body in a day or twos time – when your body kicks back at you pushing yourself. Remember to plan for likely fatigue and not just pain.
Work is a reality of life. Something that many of us with endometriosis are determined to keep part of our reality. Changing or stopping work isn’t practical for all of us, neither is the option to work from home or to reduce hours. Instead here’s some practical advice for continuing to work when you absolutely have to.
Some practical examples of how to cope
Tackle the really difficult or taxing tasks on your list when you feel most able
Perhaps at the start of the day when you have the most energy.
Hold back simpler tasks
Things that require less thought or movement that can be done more easily when in pain or fatigued, without you feeling you’re failing at work.
Share your experiences with your colleagues
Talk (within reason) about how you’re feeling and what you’re finding difficult so they’re better equipped to support you
Prepare for the next day when you feel well
Make your lunch or prepare your outfit (for the next day) the night before when you might be feeling more able. Time spent when you are well allows your body to rest more when it’s not.
Plan as much as possible
Try to spread out your tasks for the day/week so you’re never attempting to do too much at once.
Stagger your holidays
Pace the leave you’re entitled to for when your body needs a break from the 9-5 schedule. Make some time for you, and what you want to do with your day.
Have some emergency supplies
Keep a stock of items you’ll find useful at work within easy reach. This might include painkillers, warm clothes, comfortable shoes and heat pads.
Try to go for a walk
No matter how small, walking gently at lunch (even for a little while) can loosen your posture up a little bit and make the second half of the day (when your fatigue is perhaps worse) a little easier.
Rest when you need to. Do this as frequently as you can. It can be something simple like pacing yourself with a snack or just rising and moving briefly.
Share relevant information with your employer
Disclose information about your endometriosis if you feel able to, as your employer has a duty of care to you (and to support you) – especially if you have a chronic illness.
Have some useful/positive information ready
Save this for the bad days, read information you’ve found helpful or inspiring, use it to keep you going, this will help remind yourself that bad moments and days will pass.
Talk to others who have endometriosis
Others with the disease will completely understand what you’re going through, share how you’re feeling and what how you’re coping – you might help them in the process
Having comfortable, loose clothes will help the days when your pain is really bad. Similarly soft, practical shoes will help with movement.
Remind yourself of why you keep working
Think of your goals and what you want to accomplish. Think of how important working is to you, your identity and sense of wellbeing.
Think of the bigger picture
You may be stuck at work in horrible pain, and rather be at home or doing something else with your day, but remind yourself of what else continuing to work enables you to do.
Work at a comfortable temperature
Trying to work when you’re too cold or too warm will increase your discomfort and pain, do everything you can to be comfortable.
Take your sick leave when you need to
Don’t feel guilty about it. Note what days you take, and make sure your endometriosis pain is recorded by your HR department, follow all the proper procedures.
Remember that you’re doing your best, that means staying positive despite impossible odds. Focus on what you’ve managed to accomplish that day, rather than what you’ve not been able to do.