Keeping your independence when you have endometriosis

Thanks for the suggestion Claire! You can ask me to write about a blog post for you too! 🙂

Independence means different things to different people. Before I got ill I thought independence was the freedom to do anything I wanted, an endless horizon of possibilities just waiting for me to find them.

I’ve had to re-adjust what independence means since my endometriosis diagnosis, this appraisal of what independence hasn’t changed so much as my expectations are now a little more grounded. Growing up we’re told we can do anything that we put our minds to if we worked hard enough. Now with endometriosis it feels like some days are a fight to get back to that inspiring feeling of my life feeling like it’s truly mine.

I don’t feel like this anymore because I’ve realised over time that the best way to become the master of your own destiny again does mean asking for help from others, so you can save your energy for the things you really want to do.

Because chronic illnesses like endometriosis does mean giving a little of your independence away – but always to the right people.

Delegating aspects of your life

Independence now means something different to me. It means how I’ve learnt to let go of some things and put my trust in others. This allows me to life my live with happiness, dignity and mutual respect from those around me.

Before I got ill I wanted to do everything myself, I’d insist on work I did being perfect, I wouldn’t be satisfied with something unless I had I seen it or done it myself. Looking back I was quite mistrustful, and my illness forced me to give away all of these tasks to others. To ask things of people for perhaps the first time.

Here’s an important thing to remember though. The loved ones that live around you often feel helpless because of your illness, they see you struggling with pain and want to do something tangible to help. This is how I’ve slowly come around to accepting help from others, how I’ve gotten used to asking and thanking people for their support.

It’s a way to appreciate people who have stuck by you by giving them the opportunity to do something to help with your wellbeing. The very best people in your life will never, ever tire of helping you. These are the people to hold onto for dear life, because they help you not because you are helpless, but because they care enough about you to empower you to focus on what really matters.

For example, they know that if you attempt to carry a very heavy item you will hurt yourself, that every action in your life has a cause and effect, whereas their decision to help you by carrying that item causes them minimal discomfort and that in turn will allow you to work that afternoon and the next day because you successfully avoided pain.

It’s a beautiful gesture, and that’s how I think about help from others, accepting help when I need it (and especially when it is offered) and I know I can’t manage something myself.

Feeling too dependent on others

I realise that asking for help from others can be hard, especially when it feels like you’re always asking for help and seemingly never able to manage doing something for yourself. In these situations I’d urge you to think of the great value you still offer your loved ones despite being ill. You’re still the same person, with the same personality and the same sense of self. These are the things that make you “you” and why your friends and loved ones fell in love with you in the first place.

They’ll do anything to keep that same, lovely person around, and if that means helping with a few things day-to-day – so be it, a small price to pay for a true friend.

Some people may find your illness too much, they may not like the idea of having to muck in and help with another persons life. That’s their choice, and you will lose some friends because of chronic illness – I’m sure some of you already have.

Sadly that is normal, but the best part of those losses though is finding out who sticks by you. They are the people to pour your energy, love and time onto, they are the people to whom you will never be a burden, those are the people who will never judge you and will only ever see you as someone who is growing in strength rather than becoming weaker.

Finding a new sense of worth

Finally becoming ill means readjusting your sense of self. Healthy people will measure their success by the type of work they do, or the money they earn, or the items they own. You’ll soon find a few years into illness that you start to measure life’s success through different outcomes.

What becomes important is living a life that’s as “normal” as you can make it. You crave the days that are pain free, you make the most of the days where you feel good by giving back to those people who helped you through the hard days. In truth you’re just happy to carve out a small slice of normality each day, days where you are happy, content and relaxed.

Perhaps in time you can return to work, or work more comfortably. Perhaps you can go back and return to an old hobby or start up a new one. What matters is that you don’t feel held back by your illness, that you feel properly supported by those around you so that you can slowly start to flow more independence back into your life, and start doing more of the things that make you feel empowered again.

I am able to work full-time with my endometriosis because of the support I get from my partner, from my family and friends and from my work colleagues. If I refused to accept help from others this would be a much harder task, it wouldn’t be impossible, but it would be tricky, and the last thing you want to do is make your pain-ridden life more complicated than it needs to be because of a sense of shame. Don’t be ashamed of your illness, or offers of help, both open up new horizons.

8 responses to “Keeping your independence when you have endometriosis

  1. OMG this is a great blog and you wrote everything perfectly. This is exactly it. In a nutshell, what we all have to go through or have gone through. I did lose friends along the way, but I know who my supporters are (and also who my enablers are when I’m feeling poorly) and I wish I could repay them. I am so grateful for each good day. Thank you!

    • Thank you so much. You do repay those around you though, by staying strong and holding onto yourself when endometriosis does it’s best to take your away. 🙂

  2. leighturtle

    This post is full of great advice. I have Hashimoto’s (and some other stuff), which also causes long periods of fatigue. It’s hard to become more dependent on others, but it’s great to have support when you need it. I’ll have to keep that in mind. 🙂

    • Thanks Leigh, I hadn’t appreciated that you were chronically ill. I hope you’re as well as possible. Hope we can talk more about coping with chronic illness in the future. I never tire of hearing about how other people manage.

  3. This post should be a ‘give away’ on someone’s website. i’d love reprint it for my site — unless you want to do so. It’s a keeper.

  4. Pingback: Brain Tumour Thursday Radio – It Is Not YOur Fault |

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

My other sites

Pioneer Project - Video games, UX and sustainability