There are many types of invisible illnesses, and we can all research the different variations, the definitions, the symptoms, the relief remedies (if any). But can we research what it’s like living with an invisible illness? Can we research what the future looks like for us as individuals? Can we research how our lives will change because of our invisible, and chronic, illnesses? The answer is no. No one can tell us how our lives might change and the daily struggles we might go through because, unless you suffer from these types of illnesses, you’ll never know. Here’s what I’ve learned living with a chronic, invisible illness.
If you know, or are friends with, someone who has a chronic illness then you may have an idea of how hard it can be. You’ve made plans with someone and they have to cancel at the last-minute. That was fine, and you understood, the first time but the third or fourth time? You’re thinking that they just don’t want to hang out with you. YOU’RE SO WRONG! In fact, we look forward to spending time with you and getting out the house for a change that, when we have to cancel, we feel annoyed and upset. I know we may do it a lot, but please don’t stop inviting us to places. When our spoons allow, we’ll be there!
Living with an invisible illness often means that people don’t understand what we’re going through on a daily basis, unless they also suffer with an illness or know someone who does. The problem with this? Those days when you really need to get out, perhaps you have a doctors appointment, but you’re really struggling and park in the disabled bay in a car park, or sit in the priority seats on the train/bus; the comments that you receive from people because “there’s nothing wrong with you”, “you’re faking it” and, even, “well you don’t even look sick”. THEY’RE HURTFUL. I didn’t choose to have this illness, I didn’t choose for it to have this effect on my life, and just because you’re incapable of seeing it and understanding that invisible illnesses DO exist, doesn’t give you the right to accuse me of “faking” my debilitating illness.
The amount of times I hear “you’re too young to have a chronic illness” astounds me. Something that comes with having an illness is spending a lot of time explaining to people what it is and what effect it has on you. Although it can get tiring at times, I don’t mind.. at least people are trying to understand. I don’t hear this phrase very often but, when I do, I feel like saying: if I had the choice, I would be out living my life like the rest of my friends.
If someone had told me, when I was first diagnosed, that I would be on the number and cocktail of pills I’m on now, I probably would have laughed. From painkillers, to vitamins, to anti-inflammatories, you name it, it’s in my pill box. So much so, I’ve just had to upgrade to a bigger one! Although it’s multi-coloured and I love it, so I’m not complaining… too much. Every now and again though, I have to take a break from my meds to give myself detox time. I know not everyone can do this and I count myself lucky that, from time-to-time, I find myself being able to take that break from them, just for a little while.
The hardest part of living with an invisible illness, for me, is having so many aspirations yet coming to the realisation that I may not get to fulfil them. I have always been a stubborn, determined perfectionist; Mam’s always telling me. However, career goals and travelling dreams, among many, are things that, at some point, I may have to accept might never happen.
So that’s just some of the things I’ve learned about living with a chronic illness. They’re hard to live with, mainly because of the huge stigma that surrounds them, but, if you ever find yourself needing to explain, remember there’s always other people who will understand! In my next post, I will be talking about ways in which you can overcome some of these struggles, so keep an eye out!
I wish you all a very happy and loving week ahead.
February 13, 2017 at 9:30 am
I know just how hard it is to live with an invisible illness ( I have diabetes type 1 and depression with anxiety) and the amount of times I’ve been judged is ridiculous! It’s hard enough dealing with your own health without having people bully you for lack of understanding.
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February 13, 2017 at 10:15 am
You are completely right. I personally don’t understand it because my parents brought me up in a way where, even before I was diagnosed with my illness, I understood and accepted there were disabilities that we couldn’t always see. It doesn’t make them any less relevant or “faked” in any way, which is often what we hear. If they really knew what we go through on a daily basis, I suspect they’d be shocked!
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February 13, 2017 at 11:51 am
Gentle hugs, Abbie. Being young and chronically ill is definitely hard, and you’re right, everyone deals with it differently. Even if two people have the same syndrome, it is going to affect their body differently, and grace and understanding go a long way! Thanks for sharing!
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February 13, 2017 at 9:30 pm
Thank you, Kat. Unfortunately, we can’t make everyone understand but we can increase awareness and try to end the stigma.
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February 13, 2017 at 6:27 pm
Great post. I have Ankylosing Spondylitis and Fibromyalgia but LOOK perfectly fine. I do try to keep them as invisible as possible because I have young kids, but there are times where it is so hard to function. Keep plugging away. Its all we can do:-)
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February 13, 2017 at 9:20 pm
Yes, I’m completely the same. Not many people were even aware that I suffered with any type of illness until I started my blog! I wish you lots of pain-free hugs and well wishes!
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February 14, 2017 at 3:58 pm
You are so strong. I have anxiety, it makes me eat like crazy. I don’t even talk about it, don’t know why.
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February 15, 2017 at 1:24 pm
Thank you! It can be hard to talk about these things, and that’s okay. Never forget, though, that there will always be people here to support you through your hard times!❤️
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February 14, 2017 at 4:21 pm
Thank you so much for sharing your story. I can only imagine how challenging it must be when people judge or criticize you just because you don’t outwardly show what’s going on inside. The key is – people need to mind their own business and worry about themselves. Wouldn’t that be nice if the world really worked that way? Ahh – we shall continue to dream…and in the meantime, do our best to care for ourselves in the most loving way possible. 🙂
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February 15, 2017 at 1:50 pm
Thank you!❤️
I agree. I was brought up on the phrase “don’t judge a book by it’s cover” and I agree with it wholeheartedly. It makes me sad that others don’t pursue the same philosophy. Treat others as you would like to be treated yourself. If the world did work like that, it would be a much nicer and peaceful place.
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February 14, 2017 at 4:55 pm
Wow, girl. I love your honest here. It takes a lot to be this open with the world. Good for you!
– xoxo, Azanique
LotsofSass.com
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February 15, 2017 at 1:52 pm
Thank you, I really appreciate it!✨
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February 14, 2017 at 5:40 pm
I feel you. I have Epstein-Barr and people don’t understand that when I say I am exhausted, that I really am EXHAUSTED. Great read and perspective.
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February 15, 2017 at 1:55 pm
I’m sorry to hear this. I understand that people cannot always understand the goings on of a particular illness/condition/disability/etc., in terms of knowledge, but understanding in an empathetic way goes a long way. Unfortunately, in this world today, everyone is so quick to judge and dismiss. I wish you well!❤️
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February 14, 2017 at 6:18 pm
This is such an informative piece. Thank you for putting this out there.
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February 14, 2017 at 6:29 pm
Oh I hear you. I have a couple of chronic illnesses which have had a huge affect on my life but I get on with things and try not to let them stopping living.
90% of the surviving is your attitude. Keep it positive and ignore the haters. They aren’t part of your life so their views are irrelevant.
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February 15, 2017 at 1:59 pm
100% agree. I think the hardest part for me is that I follow a “treat others how you would like to be treated” philosophy, and so it can be upsetting when you see others not following suit. Like you said though, their views are irrelevant.
I’m sorry to hear that you are, also, affected by chronic illnesses. I wish you well and hope you have a great “spoon” week!
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February 14, 2017 at 6:34 pm
Wow this post has definitely been an eye opener. Now I am seriously considering reading up further on chronic illnesses. So many people are probably affected by this. So it would be a great idea to make myself more aware and understand that some people suffer with this and how to deal with them. Happy Valentine’s Day btw
http://www.travelbeautyblog.com
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February 15, 2017 at 2:01 pm
I love this. It’s people like you that make everything so much brighter. You don’t understand them, but you are willing to try and I think that’s amazing!
Happy (belated) Valentines Day to you also! I hope it was one filled with love and laughter!
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February 14, 2017 at 8:32 pm
This is such a powerful post. It’s so difficult living with an invisible illness. My partner suffers from a chronic invisible disease that is just starting to get recognized by the medical world and people always say to him “you look fine” when in fact he’s writhing in pain. I have lived with depression and anxiety for the past 10 years. It’s hard enough dealing with the thoughts in your head, but adding people’s total lack of understanding, or sheer ignorance to your change in behavior, makes it that much worse. Thank you so much for sharing this.
xo, Helene
http://www.circleskirtsandpetticoats.wordpress.com
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February 15, 2017 at 2:04 pm
I’m so sorry to hear that both you and your partner are affected by people’s inability to be compassionate and understanding. I can only hope that we continue to raise awareness to ensure this doesn’t happen in the future. Sending you both love and well wishes!❤️
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February 14, 2017 at 8:48 pm
Im sorry that you have to feel this way. Generally people lack compassion and can’t put themselves in your shoes. My BFF suffers from anxiety and Bi polor disorder. it’s taken me years to fully grasp his illness. One has to be open and patient.
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February 15, 2017 at 2:12 pm
You are so right. I only wish more people have the same patience and understanding as you! You rock!❤️
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February 15, 2017 at 2:07 am
Invisible ilnesses! Ive got a few myself. Fibro, depression, ocd, social anxiety. I know how it is. Keep your head up!
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February 15, 2017 at 2:13 pm
I’m so sorry to hear you suffer from these! Stay strong, and sending love!❤️
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February 15, 2017 at 2:50 am
This would be hard. I do know that these illnesses exist and people need to be more understanding. It’s a shame when people don’t take the time to get it.
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February 15, 2017 at 4:01 am
Thank you for using you blog as a platform for awareness and a place of support for people who might be suffering from the same illnesses or a similar one.
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February 15, 2017 at 5:53 am
Thank you for bringing this to the blogging forefront. It’s so important that everyone know that not all illnesses can be seen or heard.
Beth || http://www.TheStyleBouquet.com
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February 15, 2017 at 10:58 am
You know, as a teacher for children with special needs, I feel the exact same say. It’s not necessary an illness that my students are faced with, but they have true learning disabilities that impact the way they function in society. However, because it’s not a physical disability, other people are less than friendly when my kids get in their way or do something that’s not “socially appropriate.” Because they’re not in a wheelchair or because there’s no physical deformity, people just assume that they’re acting out on purpose.
If we would all just approach each individual person with this mentality of, “everyone is going through something,” I think the whole world would be more understanding.
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February 15, 2017 at 2:18 pm
I hear you! Although I discuss illness/disabilities and such, I don’t limit it to just these! I do try to relate to everyone, because the sheer number of people who experience this astounds and upsets me! I’m sorry that your children are faced with these issues. Although it is hard for everyone to hear these types of comments, it is even worse that children have to hear it! As children, they should be surrounded by love, understanding and taught they are meaningful and worth everything they are. They should not have to grow up thinking they are less than anyone else because of a few narrow-minded people who cannot accept everyone is different.
I salute you! Keep up your great work with these kids!!❤️
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February 15, 2017 at 12:18 pm
I’m sorry you are going through this kind of illness. I can’t imagine what you going through everyday. I know this illness exist but not many people take it seriously. Thank you for sharing this.
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February 15, 2017 at 12:50 pm
I wish that everyone could understand but reality – they can’t . What we can do is help spread awareness, and hope for the best. Have patience and always smile.
-blairvillanueva
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February 15, 2017 at 1:31 pm
This is such an eye-opener. I honestly have no idea how people like you feels and I am actually guilty of judging others physically. I have seen a couple of people who looks fine but uses the facilities offered for PWD and like others, I do judge them. I’m very sorry. Thank you for sharing this wonderful post. I hope you write more posts like this so we would be very much aware of our actions. 🙂
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February 15, 2017 at 2:24 pm
Thank you for this comment. Unfortunately, we are guilty in judging others from time-to-time but, the important thing is, that we make up for our wrongful actions and better ourselves for them. What makes it so hard, is those that take advantage of the system. Those that, actually, don’t suffer with any sort of illness or disability but still use the disabled facilities simply because they don’t want to have to walk further etc etc. It’s people like those that make it harder for us who actually need it, and where most of the negative comments we receive stem from!
Thank you for understanding, it means everything ❤️
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February 15, 2017 at 4:40 pm
And here I think i was alone my parents call me silent river because they claim I dont let anything bother me but I suffer from anxiety and depression for years im going to be 21 this year and its been hard. Im glad your open about this so i can be honest and breathe a little I have so many dreams to travel to france to understand other cultures but life just not set up that way for some of us.
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February 19, 2017 at 11:16 pm
I hear you! I’ve got so many places I want to travel to, but unless I do it in the next few years, I’m worried I may never make it!
I’m sorry that your parents don’t see the underneath and how it affects you. I’m always here if you want to chat about it, especially as we’re the same age. Keep strong my lovely, sending you lots of love❤️
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February 15, 2017 at 11:20 pm
Sorry you’re having to deal with this terrible illness. A dear friend of mine suffers with chronic illness and has canceled on me many times but I understand it’s the illness not me. I can’t even imagine what it’s like being in pain on a daily basis.
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February 19, 2017 at 11:15 pm
Thank you. We need more people like you in this world Bianca… understanding and patient!❤️
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February 15, 2017 at 11:37 pm
Sending you so much love, Abbie… you’re definitely not alone. I have a brain tumor, chronic migraines, and Addison’s disease – I look totally fine on the exterior, but am a bit of a mess on the inside. Stay strong, love. Xx
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February 19, 2017 at 11:14 pm
Thank you!
I’m sorry to hear you suffer with these. Sending you some spoonie love!❤️
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February 16, 2017 at 12:49 am
So sorry to hear you have had to go through this, hope it gets better and easier! You are doing such a wonderful job spreading awareness about it!
xx, Kusum | http://www.sveeteskapes.com
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February 19, 2017 at 11:13 pm
Thank you!❤️
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February 16, 2017 at 1:19 am
Thank you for this. My mom had Rheumatoid Arthritis most of my life and died from it. It was terrible. I deal with chronic pain too. Yes….Live for the moment and do what you can. Hugs to you.
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February 19, 2017 at 11:11 pm
I’m sorry to hear this. Sending some spoonie love❤️
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February 16, 2017 at 3:01 am
Thank you for sharing your story and spreading awareness – this is so very important to speak about. Hugs!
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February 16, 2017 at 4:46 pm
I can’t thank you enough for sharing this. I have depression with anxiety and though I have meds sometimes it gets the best of me and I really don’t feel like being bothered. I can go from being really excited about a social outing to wanting to throat punch the person who invited me with no logical explanation. I think it’s awesome that you’e sharing this journey so others know they aren’t alone.
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February 19, 2017 at 11:09 pm
Thank you!
I’m sorry you live with these conditions. Unfortunately, nothing can ever help these types of illnesses/conditions fully and, so, they all get the best of us sometimes. That’s okay, we’re only human after all – even if we are superhuman! :p
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February 17, 2017 at 4:36 pm
Thanks for sharing your story and bringing awareness to invisible illnesses. Sending you gentle hugs and appreciate you creating awareness. Cheers.
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February 22, 2017 at 4:11 pm
Wow, I love your heart, honesty, and approach in this article! It is inspiring to me to open my eyes and never judge or assume anything about anyone. Thx so much for sharing your story
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February 26, 2017 at 2:16 am
Thank you. I appreciate your kind words❤️
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