Chapter 1: Where to begin?

Where to begin. It’s the question we ask ourselves internally every time a doctor asks us “What is different since our last consultation?” Or when your friend checks in on how you’ve been doing since the last time you talked. The stranger who has the utter ignorance to ask what your disabled badge is for. Or when the pharmacist who asks what drugs you’d like to request this week. It is the biggest question for so many of us. It is the hardest question for all of us. What we endure on a daily basis is just too much to put into words most days. Too much for the polite conversations where people are just happy to pass the time of day. When you are faced with the dreaded question “How are you?” and you see their eyes immediately glaze over in discomfort if you answer anything other than “I’m doing better thank you.”

They don’t want to hear that you have to deal with incontinence and you that you shit yourself 3 times in public this week; and because of this you have to carry around a spare pair of knickers everywhere you go!! Or that you went on a date (the first one since you were diagnosed) and sat down to a meal and immediately felt too sick to eat anything. That your peers call you anorexic behind your back because they don’t take the time to understand your illness. Or that your hair is falling out and you cry about it every night before trying and failing to fall asleep. Or that so often people confuse your one day of makeup as an improvement in your health. Your anxiety is spiraling out of control and sometimes you wonder if you’re just a little bit crazy! They don’t see that most days you can’t make it out of bed to go to the toilet, nevermind, your kitchen which happens to looks like a bomb site because you’re too fatigued to clean up.

Chronic illnesses are all different. They all come with different tests, symptoms, medication, treatments, specialist doctors and hospital stays. But they all seem to carry the same pain and misunderstanding that can leave you feeling incredibly isolated and alone. We at CISFA understand this more than most. We are a charity run by the chronically ill, trying to provide the support that we as individuals have missed along the way. We want you to join us on our unfiltered journey of life with a chronic illness. We hope to educate you on the different chronic illnesses of our members, tell all the gory details of some hilarious hospital visits we’ve had and get real about mental health because IT MATTERS.

Life can sometimes feel overwhelming so keep checking in and maybe our page will help you feel a little less alone in this crazy mess we call life!

“The strongest people I’ve met haven’t been given an easier life. They’ve learned to create strength and happiness from dark places.” Kristen Butler

Please don’t hesitate to contact us with any questions, support needed or topics you would like us to discuss – cisfablog@hotmail.com

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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