We’ve never met somebody who enjoyed being sick, but imagine being sick with no end in sight! This concept is unfathomable to anyone who hasn’t experienced it firsthand. People with chronic illness, often referred to as Spoonies, live a very different, and arguably, more difficult life than most.
Here is our list of 7 things you will only understand if you have chronic illness.
1) You spend a lot of time feeling lonely.
Partially because you are alone. You may have had to quit your job or your hobbies because you’re physically unable to leave your home.
COVID-19 taught the world that getting to be at home all day isn’t exactly what you’d imagine, and the mental health issues that come with being stuck at home are very real.
But even when you aren’t physically alone, it is difficult to be surrounded by people who don’t understand or to be in situations where you’re expected to turn it “on.”
Constant pain and silent suffering is a really isolating and lonely experience.
2) You’re constantly disappointed by your illness.
The thing about chronic illness is that there isn’t usually a “one size fits all” treatment. Each time you try something, it’s hard to not get your hopes up. Many treatment plans continue to not work or only temporarily ease your symptoms.
Ever heard of FOMO? Fear of missing out. Not to complain, but missing social events and not knowing if you’ll feel well enough to leave the house is disappointing.
Your body gives out on you when you need it most and it is difficult to not be able to do what you previously could. Simple tasks are no longer achievable and some exhaust you of everything you’ve got.
3) You’re used to not being believed by doctors…and everyone.
Invisible illness is exactly that. Invisible to those who aren’t the ones experiencing it. How do you go about proving migraines, mental health issues, chronic fatigue, etc?
Diagnosis and treatment of chronic illness can be hard to come by. Many doctors are skeptical and slow to come to the conclusion. Chronic diseases like chronic Lyme are not even considered to be real by many doctors.
If you’ve ever been told you don’t look sick…you’ll know it is not always the compliment everyone else thinks it is.
4) You’re always tired/in chronic pain.
Chronic fatigue isn’t just about feeling tired. It is about still feeling tired even when you’ve slept. Granted, chronic pain makes it a little difficult to actually sleep for more than a few hours at a time…
The crazy thing is that life goes on and that means living your life and pushing through the pain. The strength it takes to do that goes unnoticed unless you’ve been through it.
If you’re tearing up while reading this, you probably have a chronic illness.
5) You feel flakey and burdensome.
It’s not like you don’t know you’re disappointing people regularly. Saying no to social obligations or seeing the look on your spouse or friend or child’s face when you have to cancel plans takes a toll.
The guilt you feel is real. You would have never missed things before and you would push through if you could.
And for those who are lucky enough to have a strong support system, it’s easy to feel like a burden. S/O to family and friends who continue to help time and time again.
6) You rely on an online chronic illness community.
The need for an online community becomes necessary when you don’t leave the house and can’t see your circle of friends. These communities are the places you can talk with people who can actually empathize with you and not try to “fix” you.
Online communities for spoonies are places to find the best memes, read the most sincere stories, vent about your day, and learn what treatment plans and symptoms others are experiencing.
If you’re in need of a good one, check out our private Facebook group.
7) You miss who you used to be.
So many emotions. Significant life changes. Things were so much simpler before you got chronic illness.
And you would do anything to be healthy again.
Living with a chronic illness can be devastating both physically and mentally, and it can be hard for outsiders to understand and help. Most spoonies persevere and are not looking for pity, but it sure feels good to be acknowledged and heard.
Share this article to show your support for the chronic illness community and help others know they aren’t alone.