Christmas for the Chronically ill.

Christmas time for most is a time of happiness, good food, family fun and of course holiday cheer. But for us chronically ill it isn’t always as simple as just sitting back and enjoying the festivities. We have so much beyond the fun, so much to plan for, safe foods to think of and escape routes to plan. Self-care during the Christmas period is paramount, but the vast majority of us somehow let this fall to the bottom of our list. This needs to change. You need to come first. This is easier said than done with so much else to think of but here is our advice on how to make this Christmas a little easier for you.

“Self-care is giving yourself a moment to pause” -Cecilia Tran

Firstly, and most importantly, it is okay to say no. So many of us forget that ‘NO’ is a complete sentence and sometimes we really need to use it more often. Over the Christmas period it is so easy to feel obligated to attend every invitation, help out at each family gathering and change your usual routine dramatically. Now we all experience the added pressure of the holidays. In fact often even without the pressure, we naturally want to do more and go out of our way to ease others’ stress. However, you have to learn when it is okay to say no. It is so unbelievably important not only for your physical health, but your mental health too. Don’t be afraid to ask for alone time. Don’t be afraid to put yourself first.

Show your emotions. Christmas isn’t always a happy time for everyone. It is an especially hard time for some. People expect the Christmas period to come with cheer, but sometimes it is filled with sadness and a bundle of other overwhelming emotions. Allow yourself to feel them. Just because people around you are happy and cheerful doesn’t mean you are required to feel this too. Christmas is what you make it. You are not required to patch on a happy face the whole holiday period in order to make those around you feel more comfortable. That is exhausting and only harms you. Christmas doesn’t make all of your struggles go away. Life is still there the day after, so pretending it isn’t is hard for us chronically ill. Especially when we have constant reminders of that very day. Whether it be intense pain, fatigue, being too sick to stomach Christmas dinner or in too much pain to hold a conversation.

Unfortunately, Christmas/any holiday can be a time when even those close to you forget you’re ill, and maybe not having quite as much fun as them. Maybe you need to go to bed early, or skip the games evening, or sit out of helping to cook. Whatever it may be, try and communicate. We are all guilty of feeling like we have ruined the day or that we should push ourselves just that bit too far so as not to rock the boat. Don’t. Be open with how you feel and what you can physically and mentally cope with.

This leads to our next tip. Make clear boundaries. This will help you feel more at ease and will also allow those around you to understand just how much you can cope with. This will help you so much more than you know. It will also allow you to feel less anxious going into family situations or a long day, because you will have already laid out just how much you can deal with. Now people are people, so we can’t promise that you’ll avoid the eye roll from certain family members who just don’t get it. But who cares. Your health is most important. Leave others around you to deal with their own misunderstanding, focus on yourself and how you can have the best day possible.

Lastly and most importantly try and enjoy it. I know Christmas day is just like any other day. Your symptoms don’t go away, your medication is still there and you can’t magically eat gluten. But just try and find at least one moment during the day that you take for yourself. Enjoy the moment, feel it and truly live in it. Despite the pain, the endless doctor’s appointments, the feelings of loneliness, nausea and the never-ending roller coaster of your life. You are here. You made it through another year and you’re alive. That in itself is the biggest gift. Learn to love yourself and show that love to your body, mind, and self. Be as kind to yourself as you would be to your very best friend.

“Give yourself the same care & attention that you give to others and watch yourself bloom.”

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

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 –

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 –

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