The reality of living with a Chronic illness

“What does a chronic illness mean to you?”

“What is the reality of chronic illnesses”

Our team asked several people living with chronic illnesses for their own personal quotes on these two questions and I’d like to share the responses we received.

I feel like the majority of people don’t understand the reality of actually living with a chronic illness which then leads to them not taking it seriously and it’s always put to the side in conversations or even compared to other illnesses.

When you tell someone you have diabetes the first thing that pops in their mind is “oh, just don’t have sugar then” or “why did you eat so much sugar”

Everyone sees the smiles on our faces but no one truly sees the constant battles we go through.

Living with a chronic illness is a full time job that we did not ask for nor can we get a break from.

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"Chronic illness feels like a constant weight on your shoulders that just won’t shift. It’s always on your mind, no matter how much you try to distract yourself. The invisibility of my condition makes me feel so alone and misunderstood by my friends. It’s like constantly walking with a stone in your shoe, you carry on with life but with every step you’re aware of that tiny stone, and nobody around you knows."

"It’s hard for me because I always try and stay positive because otherwise I’d just be sad all the time, but there really are no days off and there’s absolutely no respite from it But we’re amazing because we keep ourselves alive every single day no matter how tired we are, we try our best every single day and that is more than enough."

"Living with a chronic illness is like constantly battling with my own body. I am always tired, always putting on a brave face and fixing everything with a smile. When on the inside it's a constant anxiety. I always used to think about where I could go to privately do my insulin so no one would notice or look at me differently. With age and experiences I have grown to realize that although I have a chorionic illness, I am still human, people don’t look at me differently. Everyone has their own issues. I haven’t let diabetes hold me back in any way. Although if I could turn back time and never have diabetes I would in a heartbeat but I have learnt to love and accept myself for having it and I know I am a stronger person for it."

A Chronic illness is a full time job. It requires 24/7 management. It consumes your thoughts and life with everything you do. It requires endless phone calls and coordination between doctors offices, insurance, pharmacies, and medical supply companies. It is a type of stress that only we know. It can be overwhelming at times but it is important to always take an overall optimistic and positive approach otherwise chronic illness will swallow you whole. I personally am able to do so by finding good friends who have similar chronic illnesses to me and having open and honest conversations. That’s my number one tip to anyone dealing with the struggles of their illnesses- find a friend who can truly empathize with you and who can cheer you on.

"I think the hardest part would be the discrimination as its really soul crushing and I'd also say wanting to fight back but you can't as it only harms you."

"Living with chronic illness is upsetting in the essence. I had to learn to accept it, and manage It. Not only is it a massive learning curve, it is a big mental challenge. I think the psychological aspect of living with chronic conditions is very important. We need support, we often need time and tools to be able to deal with the extra mental load."

"So to me, on a day to day basis it’s just constant. My illness is always there. I’ve learnt to live with it, and mostly it’s fine, but at times it can get overwhelming that it’s forever. I can just imagine all the free time I’d have if I didn’t have to deal with diabetes, the peace of mind. It’s exhausting and it’s unfair, and I let that get to me on occasion, but for the most part I just deal with it because that’s better than the alternative, and even though it’s always there I can live my life how I want to. I’m also aware I’m very privileged because I live somewhere where my illness is easy to live with, as I get all the life saving medication and tech I need for free, and that’s not how it is everywhere."

"Living with a chronic illness not only means managing our illness, but also navigating the healthcare system, dealing with insurance issues & pharmaceutical errors. Exhaustion. On top of exhaustion."

"(I tired) seems to sum it up well"

"I guess it kind of feels like a new challenge every single day"

"I think more than anything it just feels like forever - which technically it is? Unless by some miracle there's a cure in our futures? I actually don't think I have heard type 1 being described as a chronic illness very much so it feels strange but at the same time really states the severity of type 1 - living with a chronic illness feels like such a serious term - which it is - but its not debilitating - we can still be young wild & diabetic - in that order!"

"For me, the term 'Chronic Illness' sounds pretty scary. In reality I feel that having type 1 is just an extra (rather annoying) part of my life. Don't get me wrong, if I never got diagnosed with type 1 or if someone could take it away from me now, I would be forever grateful, but if this is what life has thrown at me, I thank it for the people who I've met along the way, and I often say "it could be worse". "

"In my opinion, chronic illness is a battle only made for the strongest of people. It’s rewarding when we get it right but devastating when we don’t. But to be a warrior you have to go through the bad to appreciate the good."

"Having a daughter with a chronic illness is heartbreaking. Not being able to take it away from her is awful. But it also makes me strive to always do my best for her, protect her and raise awareness for her. Type 1 diabetes is so misunderstood and my aim is to educate people while giving my daughter the best life and care I can."

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"I hated feeling ‘different’ from my friends which led to an extreme diabetes burnout and denial. I used to hide my diabetes and pretended it wasn’t there, as long as I ‘felt fine’ then I was okay in my eyes. My acceptance of the illness was delayed which impacted me more than I realized. I spent so many years just going along with the fact people said I was diabetic and I was doing the things that came along with that but I never stood back and thought what does being diabetic mean and why do I have to do so much extra than someone living without it. Once I accepted my diagnosis I gained more control and finally felt like I understood myself after years of feeling lost."

"A chronic illness to me means never having a day off and you are in control of your health 24/7. It’s tiring and you get knocked down twice as much as you stand up but every time you get back up you are ten times stronger. You are one hell of a person to get up every day and take on what you do and make more decisions each day because of your illness. You never had a choice with this illness but I promise it never picks the weak ones."

"Living with this illness for so long has shown me my strength, independence and dedication to be who I want in life and to go out and chase my dreams. Diabetes has never and will never hold me back from anything as I have chosen not to let it. My chronic illness does not define me, it is just something I have which is a part of me."

"You will never catch my complaining about my illness but this doesn’t mean I don’t find it heavy. I do have days where I wish I could have a break or days I feel like I’m trying my best and it’s not good enough but these are the days I remember I’m only human. From my experience growing up with this illness I’ve learnt bad days come as quick as they go and a new day is right around the corner which is your time to start fresh. Your best is always enough and don’t ever let yourself forget how far you’ve come. You are twice the person you were yesterday and you’ll be more of the person you are tomorrow."

Chronic illnesses are hard, but you are stronger.