So how do we keep going?

I wrote in my last update about how important it is for others to keep asking questions about our chronic illness, to give us the opportunity to share the details and difficulties of our illness.

Well today I want to talk to you about the most frequent question I get asked when someone realises I am chronically ill.

How do you cope?

That’s easy I say, I don’t have a lot of choice in the matter.

Oh that question

It must be really hard for someone else to imagine how you manage and cope with a chronic illness like endometriosis. The idea that you are in constant pain or fatigue is difficult for most people to get their heads around. Instead they project the idea that you must be very courageous or very brave to manage with an illness.

These two sentiments come into it certainly, but the not the sole reasons I keep going. I accept the presence of illness in my life, I realise that there’s not a huge amount I can do to change the way that endometriosis has inevitably changed things. All I can try and do is carve out as normal experience as I can with what’s left, and that means trying to culture some normality even on the days where my life feels anything but normal.

I don’t think that makes me brave, I think that makes me rational. That’s only happened through months of work and years of pain and months of emotional torment.

How we manage

If anything pain has a way of refining your thoughts. Time where I am well is really precious and not something that I can waste away. On the days where I feel normal the pain acts as a reminder of how lucky I am for those moments, it serves as a force pushing me through the days where I seem to be doing more. This may make me seem more productive and resourceful, but truthfully it’s my attempt not to let my illness hold me back.

So when someone asks me how I manage, I ask them how they’d manage. It seems impossible to imagine how you’d cope with an illness before you get ill. I certainly didn’t know how I was going to manage in the days and weeks after my diagnosis.

All I knew that is that there was a scary uncertainty in my life – a real one – for the very first time. It put all those other moments of doubt into sharp focus. Truthfully, I didn’t know how I was going to manage, and I was scared. In the months that followed I faltered and struggled and wept, and I’m not afraid to admit that.

However time passed too, and with time comes experience of your illness and a new appreciation of your limits and what you can manage around them.

Think about all the people in your life that you care about, all the things that you enjoying. All the pieces of your life that makes your life worth living. When you’re ill your sole aspiration is to live as normally and happily and possible – despite what life has thrown at you – and despite what it will continue to throw at you. There’s no respite unlike life’s other problems.

That’s not how I cope, but that’s how I manage.

Like many others who are ill I do this because I have to. There are people depending on me to still be around, there are things I still want to do, and I have no intention of giving up on that, or giving in simply because something bad has happened.

As my 93 year-old grandmother says about old age:

“You can be upset about how much your body is failing you, or you can realise that it’s natural and enjoy what’s left.”

I couldn’t have put it better myself.

Being brilliant

“Manage” is the key word here, it implies not that we’re sailing through life, but life entails a hell of a lot of work now. That being ill is a full-time occupation. Something that has to be wrestled with constantly and can’t be shrugged off.

My main rationale for each week normally rotates through one of the three following thoughts:

  1. I still have a great deal to live for
  2. I want my life to get even better
  3. When things don’t go as well as I’d like, I’m always doing my best, so no one can complain about that

With these ideas in mind, if I seem to be managing with my chronic illness it’s largely down to my own hard work, not due to the praise of others. People will try to describe this method of coping as being brave.

I’d describe chronic illness as managing to be brilliant – despite being dealt a very, very bad hand.

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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