Living With A Chronic Illness Part 1

Long gone are the days where I used to be able to be exhausted yet function for long periods of time. Long gone are the days where I used to not have to worry about feeling so ill that I’d have to cancel plans almost every single day.

“But you’re so young, you’re not tired, trust me! Wait until you’re in your 40’s!” they say. Well to them I say, “You didn’t have a brain tumour that caused a disease that left you with chronic illnesses at the age of 22/23”. But that’s just my story in a nutshell.

Chronic illnesses are mostly invisible, meaning you can be looking at someone and they look completely “normal” and “healthy” but underneath it all, they’re suffering day in and day out with whatever ailments their illness brings them. Chronic illnesses not only affect people physically, but they affect them mentally as well. They don’t discriminate when it comes to age, either. They’re overwhelming and stressful and those with chronic illness have to manage their time wisely. Overall, being ill every single day puts a huge strain on how you live your life.

Since there’s so many layers to chronic illness, we’ll take this 2 layers at a time – mentally and physically, but in 2 separate posts. Today we’ll focus on the mental. I’m no expert at all the different types of chronic illnesses out there, but I do know that we all relate on many levels, so if you suffer from anything, I truly hope you find some solace to know you’re not alone.

IMG_2325.JPG

When you’re young, you never imagine that you’ll get so sick that one day your youth will practically be ripped away from you. You deal with so many invisible physical symptoms that they really take a toll on your mental health. It doesn’t even affect just one part of your life, but pretty much all of them. School if you’re still there, work, relationships and the relationship with yourself.

When you’re dealing with the physical symptoms of your illness, you really have to plan what you’re doing each day and a lot of times, your plans, well… they honestly go to shit. I don’t know about all of you, but, for me? I spiral some days thinking about how I’m going to have to cancel on people or how I won’t be able to drive myself to an important appointment. I worry about how I’ll ever work at a company ever again because I’m so unreliable and so on. The worry absolutely consumes you.

If you’re still in school, you may be worrying about how you’re going to get your assignments done on top of going to class and most likely work. You probably worry about studying on top of all of that, too all while finding time to unwind because a lot of days, even an hour or 2 of anything makes you feel beyond exhausted, that you feel like you can barely function after that. You also probably worry about finding time to spend with your friends and if you’re living at home, finding time to spend with your family as well.

If you’re already in your field of work for the career you chose or just working in general while saving up to do whatever it is you want to do in life, you’re probably pulling your hair out thinking about having to work on days where you can barely get out of bed and keeping your sick days to a minimum so you don’t risk ever losing your job and so on. There’s so many layers to this that in the end, most of us just worry about, “what can I do so I don’t lose my job?”. It’s even more stressful when your employer just really doesn’t give a damn hoot about your health.

Relationships. This one puts such a strain on us because unfortunately, a lot of times the people in our lives don’t take the time to truly ask how what you’re going through affects you and also ask what they should know in order to understand you better. Even if you do tell them without them asking, a lot of times they don’t seem to understand and suddenly you find yourself, well, alone. You know these people don’t hate you, but the feeling of knowing they’ve given up on you because you can’t go out every weekend or go out for hours upon hours just makes you feel absolutely worthless even though you definitely aren’t worthless.

What do all of these usually add up to? Heightened anxiety and depression.

From all those I’ve spoken to who deal with a chronic illness, anxiety and depression are 2 things mostly all of us deal with. It’s easy to fall into a downward spiral when it seems like the whole world is at your shoulders and you have to adjust and keep re-adjusting every single day. At some point, you may even find yourself truly never wanting to leave your bed because you’re wondering, “What’s the point? I can almost never finish what I start without needing to take a break that lasts days or even weeks before I can start up again to complete it”. Needless to say, it gets dark. It gets dark quickly.

I truly hope what I’m about to share with you can one day help you if this sounds like you. I’ll warn you, it doesn’t happen immediately and you need to keep working at it. Some days, it’ll feel useless but keep pushing. What is it?

Mindfulness. Being in the present. Taking each day hour by hour, whenever need be.

I tend to dwell a lot on the future whether its 3 hours from now, a week from now or more time. I’m sure a lot of you do that, too. That’s why it’s important to reel our minds back into the reality of where you currently are at a given moment and focus on staying there. Tackle what you’re doing at the moment and only worry about things when they appear on your lap. Of course there’s some things that you do need to think about into the future, but for a majority of things we worry about, they truly don’t need to be thought about until the moment of.

IMG_2324.JPG

If you’ve had a rough day and have enough energy, try going to a beautiful, peaceful location in town or head to a spot in your house that allows you to truly unwind and calm down. My room is my sanctuary in my house and it has to be perfect at all times.

Stay tuned for Part 2 where I’ll discuss more tips on what you can do to ease your mind and body, both mentally and physically. Since chronic illnesses deal with mental and physical issues simultaneously, I’ll expand on more then. Let us know what you do to ease your mind, especially if you deal with a chronic illness!

Until next time,

Xoxo, Catarina