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.

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As well as working full-time with endometriosis, somehow I find the energy and time to volunteer some of my time each week to a local community housing project. I’d be lying if I said the last year and a half I’ve spent doing this hasn’t been extremely difficult for me, but I’ve also met some amazing people and hopefully improved my local area in the process.

Working for free does require some different skills to my day job though – namely trying to persuade people to volunteer their time and keep them motivated and engaged while staying passionate about the work myself.

As it’s time I’ve given up out of my precious well time, volunteer work has only reminded me of some really important things about my illness and I thought I’d share them with you.

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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:

• Chronic pain
• Chronic fatigue
• A lack of awareness about what you’re going through

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.

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