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.