Being able to work is a huge part of how I am able to manage living with the pain caused by endometriosis. This sounds counter intuitive, as working with a long term illness is extremely difficult, but it’s true. Working does make things easier for me in the long run.

Employment is a huge privilege that we don’t really appreciate until our ability to work comes into question. Working gives us liberty, independence and financial freedom. Now more than ever (as living with an long term illness on disability benefits is even harder in this current climate of austerity).

Most of the people I know who are ill desperately want to work or continue working. Continuing to work despite illness has helped me manage with pain, help me support myself and maintained my confidence and contact with the outside world. Illness is isolating and work helps reduce this isolation by honing your (still brilliant) mind on your job.

If you’re finding work hard with a long term illness or disability, under UK equality law you may be able to request reasonable adjustments from your employer. Laws differ from country to country but it’s mostly the case elsewhere too.

If you’re aware of this, but struggling for ideas for the sorts of things to ask your employer for, or if your employer wants to help but you’re not sure what to suggest, I’ll share some of the ideas that I have used or have helped me.

Some general advice

I do a desk job, so my guidance assumes that you’re doing something similar. I can only offer advice from my experience you’ll need to adjust this advice for your role. Please leave a comment with any ideas for things you’ve tried too. 🙂

As you should know by now nothing is simple with endometriosis or any other long term illness, so none of these suggestions will remove the pain entirely it’s about making pain more manageable, keeping you comfortable at work so that hours at work are more manageable.

You can find out more about what reasonable adjustments are here.

You’ll probably have a sense of what you can ask for and how helpful your employer is likely to be. Reasonable adjustments are very subjective, and asking for help can take confidence. These aren’t things I’ve asked for in one day. I’ve saved ideas over months and years to tackle the problem of pain in different ways as my pain changes. Even a 1% improvement in your pain is worth it.

Personally I don’t like my adjustments to be at the expense of someone else – e.g. someone taking on my work, or reducing my hours (even though both are valid options), I just like to pull my weight. I get around issues like this by making it easy as possible for someone to pick up what I am doing if I am unwell by keeping my workload open to observation by anyone and sharing information throughout my team.

If cost is an issue with any of these ideas, it may be worth looking into the access to work scheme as the government does want people with long term illnesses to keep working.

If you’re worried about asking for help in the workplace – that’s okay and I totally understand. It takes some confidence. I’d suggest trying one or two of these ideas once you’ve been at a job for a while, starting with the smallest ideas first and working up to the bigger ones.

Freedom to work as you need do

This is the most important adjustment for me, Hopefully you’ll be lucky enough to work for an employer that trusts you to be able to manage your workload and offers you flexibility in what tasks you can do and when.

Being able to change the speed, location or complexity of what I want to work on based on how I am feeling is a huge part of how I manage in the workplace. If I know I am having a bad day being able to work on something simple and easy makes things easier and often means once I get “into the zone” of work I can ease up to something more complicated once I’ve set my baseline. My employer knows I will get my work done and leaves how I prioritise tasks up to me.

Most importantly of all I can take a break when I need to to move around, get something to drink or go for a walk, or pick up a cup of coffee when I am feeling exhausted. My boss knows I will get the work required of me done. I’ve built that trust up over a long time.

For example I work in web development so if I am in agony, testing something to go onto a live site may not be a good idea, but doing some analysis on a new feature might be more achievable, and I can leave the testing for a little bit until my mind is clearer.

It’s also worth checking your staff handbook to look at your sick policy and medical leave policy to see what you can work out with your employer if you have a lot of appointments or other healthcare needs coming up. Often if you’re honest about what you need some employers can be flexible.

Having a supportive line manager and/or line manager

Having a good boss makes the struggle with work a lot easier. Hopefully you’ll have a boss that supports you actively and works in your best interest. If you don’t I’d try to make contact with your HR department and work with them. A word of warning though HR departments are generally there to look after the needs of the business rather than you, so bear this in mind at all times.

My HR department is great – but they haven’t always been. I’ve worked around this by knowing the system and my rights exactly. Sometimes things like workplace assessments and occupational therapists can be scary, but if you’re deemed fit for work and an independent occupational therapist assesses that you are protected by the Equality Act 2010, you’ll find that reasonable adjustments are a lot easier to ask for.

Once you have written evidence that you’re allowed adjustments under law, then you can feel more comfortable about asking for them, or taking the time you need to attend medical appointments or checkups.

Working from home

For some this is holy grail of reasonable adjustments, and it can be great – with some caveats. While I do have the option of working from home I rarely accept it. I live within cycling distance of my workplace and I prefer to get the exercise and go to the office. It has the bonus of getting to chat to others and having face to face conversations rather than sitting at home with my cats all day.

Lovely as that is, I’d make a few suggestions if you’re working from home.

Treat every working from home day like a regular day so;

• Get up at the same time
• Get changed into what you’d normally wear to work
• Take your lunch break as normal
• Leave idle browsing to outside work time
• Have a dedicated place to work from home (such as a desk or kitchen table)
• Log into something like Slack or Skype and have your mobile phone to hand so that people can contact you
• Make it obvious that people can contact you as normal.

Anyone offered the ability to work from home is obviously trusted by their employer and shouldn’t abuse that trust. I don’t have a laptop (which naturally would make working from home easier) but that’s because I don’t want to have to carry one around all the time and cycle it too and from work.

If you do have a laptop it would be worth asking your employer for a suitable bag appropriate to your needs to carry your laptop around in. For example with endometriosis I really can’t use bags that put weight on one side of my body anymore. I prefer to have weight spread evenly across my back, so a backpack for your laptop could be a good idea.

A different chair

If you’ve got to sit down a lot it might be worth asking for a different chair. Bog standard office chairs aren’t too supportive so you could ask for a chair with lumbar support or a neck or head rest.

Don’t be surprised if you have to have a sessions with an occupational health therapist before you can get a different chair. Although in my experience they tend to specialise in people with back pain and not people with endometriosis or other long term pain conditions. So the advice that they can give you may be fairly limited.

I actually use a kneeling chair at work and at home. This was the first thing I asked for when I became ill. They take some getting used to but kneeling chairs encourages good posture by ensuring you’re not slumping against the back of your chair (because there isn’t one).

It can be quite hard work on your knees to begin with so it might be worth trying out what I did, which is to find someone else in the organisation with one and ask to try theirs out (perhaps when they’re on leave so you can try it for a few days) you’ll soon know if you find the different seating position more comfortable.

A comfortable location

On that point don’t underestimate the importance of where you actually work. You should be relatively comfortable. Not too hot, not too cold. The general atmosphere of where you can have a big impact. When you’re too hot or too cold it can make your pain worse. It may be worth seeing if you can swap desks with someone else, or have air conditioning or heating adjusted in your workplace based on your illness.

Get an adjustable desk

This is my newest adjustment and another a really rate. I have an adjustable desk from Varidesk, so I can alternate between working while sitting or standing based on how I feel. It is amazing and I am so grateful to my employer for buying one for me.

The health consequences of sitting at a desk all day in the same position all day are only just now being raised, but they’re very real. Either way I’m sure you know from bitter experience that sometimes sitting or lying in the same position for too long isn’t a good idea for pain either. Resting all the time doesn’t always help either. In my experience, a body that is healthier and works a little more experiences less pain.

If you’re not convinced here’s my pain diary before I got the Varidesk and afterwards. It’s not perfect, but it’s something, and that’s huge when you’re in pain every day.

I like this desk because it gives me all the power of a standing desk but with none of the pressure to stand all day. I change as my pain changes, I rest when my legs grumble and I stand as my chest pain or endo pain worsens. Best of all I don’t have to disturb anyone else around me (by having to amend their desk working spaces) because the Varidesk rests on top of my existing desk.

Because of this desk I am now more comfortable at work than I’ve ever been. I’m considering getting one for myself at home too.

It’s not cheap, but if you’re an asset to your business they might consider this for you. Varidesk offer a 30 day free trial if you’re not sure if it will help you. So you can try it out for a while, see how you get on with lifting the desk up (it’s very easy but does take some getting used to especially with endo pain) and crucially see if it helps your pain any. Everyone’s different and what works for me may not work for you.

Expert patient programme

The other suggestions are all bits for your workplace, but if I had to choose one thing to ask for, I would ask for permission to attend the Expert Patient Programme during work hours.

It’s a free six week course designed to teach you how to manage with long term illness, fatigue and the difficult emotions that pain can bring. I cannot rate this course enough.

If the other suggestions make work a little more tolerable then the Expert Patient Programme is going to give you some ideas to help you out 24/7. And crucially it’s advice and support for patients by patients rather than a doctor who has no idea of the personal difficulties of following pain management guidance.

I successfully requested to take the time out of my work once a week for six weeks to attend this course and I’m so glad I did. It was time well spent looking at my pain from another perspective and I got so many good ideas. It’s also great for just taking some time to talk about your pain and the things you find difficult, and you can problem solve with the other people in your group too. It’s nice to feel like you’re not alone in a world of pain.

Too much of the support for long term illness is in the day and dependant on people being out of work or retired, so do research if this course if available in your area, or if there are similar courses or support groups you could get permission to attend in the day.

I’m positive you could do the course over and over if you needed a refresher, I’d certainly consider it for myself in another year or two.

You can find out more about the Expert Patient Programme and how to find out in your area here.