On being positive – endometriosis isn’t the end

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.

How we cope

Most of us manage with the illness by fighting that feeling perpetually, trying to push it out of our mind and taking each day as it comes, as positively as we can despite the circumstances.

When I describe endometriosis to someone, particularly the fact that it’s incurable, the reaction is almost universal – sympathy or pity.

While that’s perfectly natural, I’d far rather people were more practical about it than emotional. They could suggest ways that they can help – or even more crucially spread awareness of what we are going through to as many people as they can. So more women find out about endometriosis and the problems it causes far, far earlier than we did.

Endometriosis has changed things

This illness affects every aspect of your life. It bores into your mind constantly, the calculations of what you can manage with pain, the worries about when pain will return, how much energy you have left (despite fatigue) to complete a task. There’s no perfect treatment that can give you complete hope about your future. Endometriosis is flailing through life, hoping something sticks, trial and many errors.

Endometriosis is also about positivity. While there are many things I am no longer able to do, it’s changed my outlook on life for the better. I appreciate days where I feel “normal” in a way I never could prior to endometriosis, I savour every second. Endometriosis does mean slowing down occasionally, but slowing down to live and appreciate what you do still have.

As sufferers we realise this in our teens and twenties. Most people won’t realise this until much, much later in life. Endometriosis (and all chronic illnesses) gives us much-needed priority and a better appreciation of life. You also start to look after your body in a way you never did before too (even if it doesn’t always work in the way you want it to).

Illness shouldn’t define you

Being healthy means not having to think quite so much about life, to be impulsive to leap at what you enjoy doing wholeheartedly. Illness is still about that, but it does make you more reserved than you used to be, you worry less than you used to. You drop all the petty problems that plague others and focus on what really bothers you – how to finally be rid of your only handicap – your illness and fatigue and give yourself and the others around you a better life.

Above all you’re fearless. Nothing scares you anymore or as much as it did. Nothing can be as bad as the worst days you can go through. Every day becomes an opportunity rather than a burden.

Most importantly you’re not alone – there are millions of other women going through the same struggle as you each day, we give each other the comfort that others without illness struggle to provide. We inspire each other through the one day and into the next.

A huge thank you to the all the many inspiring and brave women I’ve met and talked to since starting this website. Save up as much of your positivity and energy that you dare and share it to as many other sufferers as you can.

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About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

7 responses to “On being positive – endometriosis isn’t the end

  1. This post really needed to be written. It is far too easy to focus on what we can’t do and the things we have had to sacrifice. But, like you, I’ve realised that this condition has actually made me a stronger person. Since I can remember people have always said that I have an old head on young shoulders but living with endo has made me grow up even more. And while I’m more cautious and less carefree than the person I was, I’m also more thoughtful and less reckless. The friends I have now are true friends who appreciate it when I choose to spend my time and energy on them. Friends I had before were fun but they couldn’t cope with the new me and have gradually vanished from my life. In a way, I’m glad that I have grown up a bit and I’m in a place surrounded by people who honestly care about me. It’s been a valuable lesson.

    • Thanks for replying 🙂

      “An old head on young shoulders” – too true – illness makes us shake off a lot of old trivialities and gives us a wisdom beyond our years.

      Lots of lessons learned here too – particularly the ones you relate about the difference between old friends and dependable friends. I have noticed many of the same thing, and come out the other side far better off than I was before in that regard.

  2. Love love love this… it almost made me feel guilty for fighting for a cure, since really endo has done so much for me! I’m sure once I start feeling bad again, that feeling will go right out the window though. 😉 Still, I wanted you to know how very powerful this post was.

  3. Hi, as we speak I am in excruciating pain with my period. Always seems to effect my right side a lot more. My hip, abdomen, lower back and leg, leaving me feeling quite sick and drained. It is just as painful as going through labour.
    I’m 38 and it’s been going on for years now.
    I often have to take time off work which is causing problems as you can imagine.
    Once my period is over I play it down until the next month but it never gets any easier.

  4. Najjemba Regina

    I am aged 22 but i have tried everything but i have a pain in my left lower abdomen and left knee for some years now but i havr failed to get a cure.I have lost weight and my health detoriates each day please help with advice

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Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

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