Part 1: Who am I now?

Life with a chronic illness is unexplainably hard. There are so many moments, feelings and symptoms that go on behind closed doors, which means no one can truly understand what you are dealing with. Even the people close to you, no matter how much they may try. Illness can take away so much. Your health, relationships, career, future plans and friends. But it doesn’t stop there, it doesn’t leave anything untouched. Your love of life, carefree attitude, stability, confidence and dignity.

One day you are healthy and able to plan for a future and the next it’s all over. You are sick and some days you can barely remember the person you were before the illness. People around you are at first sympathetic, they ask questions and send cards. But then the well wishes become fewer and the friends you’ve had for years start to disappear. You see, people don’t understand chronic illness. It doesn’t matter what the diagnosis people struggle to understand that you are ill for life. That a lot of the time there is no cure or quick fix. That your life is forever changed and things can never be the same as they were before. You start to get the questions from the people you thought you could rely on: “Are you better yet? Oh, you’re still ill REALLY? After all this time” or “Oh my mother’s sister’s friend’s cousin had something similar have you tried………”. It is these times where all you want to do is tell people to piss off and take their pity and useless advice with them!! As if you haven’t spent endless nights researching every possible treatment, forum and diet.

The thing is, chronic illnesses are life changing because they truly effect everything. At first it seems like everything is lost and that you will never see the light of your life pre diagnosis ever again. But then you have one good day. One day where you feel that little bit better, or that you spend it with the best people laughing and for a few hours you forget that this is your forever. Now life with a chronic illness does not mean that your life is over FAR FROM IT. But we promised to be honest. So those times when the depression, anxiety and self-doubt start to creep in; when the fatigue is so intense you can’t imagine ever getting out of bed again; or when you lose a little part of yourself each time you have to cancel an event you’ve had planned for months: remember never to shy away from just how hard it can be.

Chronic illness often comes along with a lot of dark days. And it is easy to believe that you’ll never be able to come through the other side. That life will always be this hard so what is the point. Believe me i’ve been there, I understand. Trying to take care of your mental health when everything else is so draining and difficult is so incredibly hard. Especially as illnesses like these make you feel so unbelievably isolated.

It comes with resentment even to those closest to you, as they will never understand how hard it is to just be here some days. But the light does return. Your life may never go back to how it was, but you can learn to live with your new one. And one day your life changes from just surviving, to you learning to actually live again. 

Grab every opportunity. Savour every smile, happy moment and simple pleasures. Self care is a journey and a difficult one at that.

Don’t get me wrong I am still fighting every day. I finally talked about just how bad it had gotten in my head. I had to make the choice to take antidepressants and that was hard. But it was the best thing I have ever done. Nevertheless, a pill doesn’t fix everything and it is such an individual decision; really it comes down to inner healing and acceptance. You have to allow yourself the patience and kindness that you would give to a fellow chronic illness survivor. I still have days where I grieve for the girl I could have been, the life I could have led and I am 6 years in. It hurts more than I could ever explain. But that is ok. This shit hurts, and even when you think you’ve accepted chronic illness life, days like this will creep up on you because guess what? WE ARE ALL HUMAN DEALING WITH IMMENSE PAIN.

We at CISFA don’t pretend to know everyone’s experiences, but we are still here to support in whatever way we can. Knowing you are not alone can make all the differences in the world.

“There is a crack in everything.
That’s how the light gets in.” -Leonard Cohen

Please don’t hesitate to contact us with any questions, support needed or topics you would like us to discuss on –

Published by cisfablog

We are a charity supporting individuals across the UK with chronic illness. This is our unfiltered blog about our real lives behind the diagnosis/undiagnosed. Get ready to laugh, cry and be downright shocked at the honest truth of life with a chronic illness!

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