@endohope Being dependent but needing your independence at the same time! It’s a battle for me xx

— ClaireW (@cvnw) March 26, 2013

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.

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On the face of things I have a great deal to be upset about. Four years ago I was diagnosed with the incurable illness endometriosis. A disease so painful and life-altering that many older women with endometriosis call it the curse.

Despite what people may think about an illness many still believe to effect women one to five days a month during their period, I am in daily, agonising pain.

I struggled to understand what was wrong with me for most of my adult life. I seemed to be a walking heap of problems from the day I reached puberty. Aches and pains. Period pain that would make me pass out. Exhaustion while doing very little.

Many years later I am bogged down with all the clutter and ill-health that comes with a chronic illness. It plagues me every day, looming behind every thought. Illness is still the first thing that greets me each morning.

Strangely though, despite all the emotion of the last four years I am the happiest I have ever been.

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I don’t have a lot of time to read these days, but today I want to talk to you about possibly one of the most important books in my collection.

It is a women’s honest account of living with an incurable and life-threatening chronic illness (lymphangioleiomyomatosis). It describes what we can all learn through the process of illness.

Most importantly in this book Carel talks honestly about our perception of death, our collective frailty through chronic illness and as such importance of living in the present, all of this with a rationality of an academic, evidenced through the framework of philosophical understanding.

It is quite frankly a required read for anyone suffering with chronic illness. Havi Carel touches on those subjects that you bury deepest inside yourself and that you find most emotive and painful. Her words recognises and soothes the emotional pain in a way only someone who carries the same burden can.

It is a great comfort to me on the worst days of my chronic illness, and I want to share some of it with you.

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“You can’t be ill, you’re so organised”

You’d be surprised how often I hear this. I wouldn’t be surprised if a lot of you hear this too.

Needless to say I am so organised precisely because I’m ill. While it’s a responsible way to manage your life, chronically ill people I don’t have a lot of choice in this decision, and here’s why.

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To many of you, your endometriosis story is still very new. You might still be grappling with what endometriosis is, and how it might impact your life. You might be experiencing symptoms that are new to you, such as abdominal pain or chronic fatigue. You might have a case of suspected endometriosis, or confirmed endometriosis which is causing you no adverse effects at all.

Today I want to speak to those of you who are still coming to terms with your diagnosis, to explain what may, or may not be things to consider and research. Coming to terms with endometriosis, and learning to live with it may not be simple or easy, but crucially it is manageable – and you’re not alone.

I want to talk to you candidly and honestly about what’s ahead – in a rational manner (but importantly with some positivity and pragmatism too).

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Before I became ill with endometriosis I was a very independent person. I was very driven and active. I liked to tackle life at my own (fast) pace.

In many ways this hasn’t changed, but endometriosis has forced me to slow down. To ask more of the people around me. This is one of the aspects I find hardest about chronic illness. To ask people for help frequently – often for things I could do myself effortlessly years ago. Endometriosis is a constant reminder of my (all too real) frailty and weakness.

Coming to terms with endometriosis has meant trying to reconcile the person I used to be against the person that’s left after four years of illness.

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So far with this website I’ve talked about the things that many of us find hardest with endometriosis. The pain, the fatigue, the shame of living with this illness and how the fact that it’s an invisible illness makes it almost impossible to both describe and be recognised.

It’s so easy to get bogged down in the negativity that endometriosis inspires, to let it wash over you and pull you down. When it’s at its worst ebb its really easy to give in to the despair and the hopelessness of the illness.

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The starting post for this website got me thinking about timings.

More specifically dates. I’ve been working on building websites since I was 14 years old – around the times my health problems first started. A total coincidence of course, but an interesting one nonetheless.

When it came to starting this site, I thought long and hard about what name to use when referring to myself. This was a problem I had back when I was 14 too, but for different reasons. Back when I was first learning HTML I was afraid to use my real name online as I was still a child.

Subsequently I have started several websites around my interests (most pertinently video games which I discuss at Pioneer Project), I do so with my real name – my full name, without shame. I am proud of my work.

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