96% of those living with a chronic condition have no visible effects of the condition, meaning they live with an invisible illness.
An ‘invisible illness’ is one in which someone lives with an illness or disability that often severely impairs their normal life, but which medical conditions show no outward signs. Examples of an invisible illness may be Fibromyalgia, Ehlers-Danlos syndrome, mental illness, chronic pain, and more. It is estimated that 96% of people living with a chronic medical condition have no outward symptoms.
Living with an invisible illness or disability comes with an unfortunate laundry list of unpleasant side effects; not only from medications and treatments, but from societal norms as well. These side effects range from others disbelief and denial of your illness, to stares from strangers, and hateful notes on your car when you use disability parking but ‘look fine’.
Living with an invisible illness takes a toll on you. Having to deal with not only the illness, but the battle of balancing what you feel physically and how others see you. Physical appearance is so often misleading, and because of the stigma behind many invisible illnesses, it becomes to easy to just put on a mask and hide how you’re actually doing. It’s easier to deal with the pain on your own.
Here are five things you should know about anyone in your life that’s battling an invisible illness:
1. They’re not faking it for attention.
The number of times that I personally have had someone accuse me of faking my illnesses is too high to count. When searching for a diagnosis for my excruciating pain from ages fourteen to eighteen I had almost every single person in my life assume I was faking it at one point or another: doctor’s, friends, classmates, teachers, specialists, you name it. When you’re sitting in very real, very scary, pain it’s hard to have a finger pointed at you calling you a liar.
Just because you can’t see it, doesn’t mean it isn’t real.
2. Just because they look fine, doesn’t mean they are.
The thing about invisible illnesses that make it tricky, is that you can’t tell how someone is doing by looking at them. There are no outward signs of the illness; you can’t see when they’re struggling, and often times they’re masters at deception. In order to function in the world many with invisible illnesses learn to put on a front and look perfectly fine in order to go through life. They may be in tremendous amounts of pain, but you wouldn’t know by looking at them.
3. They’re not flaky.
Invisible illnesses can strike at any moment. Those with chronic illnesses and invisible disabilities have to gauge what’s best for them. They may cancel last minute, may bail on lunch plans, outings, etc. It’s not that they don’t want to be there, but please remember, they’re sick. Sometimes we have to cancel because as much as they want to, they just can’t right now. It’s not about you, but health has to come first sometimes.
4. Not all invisible illnesses are the same.
People don’t deal with illnesses well. Especially when they’re complicated or different. Illnesses remind us of the fragility of human life, remind us that we’re all going to die some day. They’re uncomfortable, we get it! So when you spit off facts or ideas from something you read online because you don’t know what else to say, I get it, but it’s not helpful. All illnesses are different. Take time to ask questions, listen, learn about the specific illness your friend is dealing with. It may be uncomfortable, it may be hard, but that doesn’t mean it isn’t important.
5. Sometimes, we need help.
Living with an invisible illness isn’t easy. It is both a physical and emotional battle to fight. You get worn down, tired, and sometimes you need help. We may ask you for help from time to time, maybe more often. Often times it’s a shoulder to lean on when it all gets too much. Sometimes it’s someone to come and sit with us while we wait for test results, or get an infusion, or some other doctors related activity. We all need help sometimes, whether we have an invisible illness or not, so just remember that. As the Beatles once sang, I get by with a little help from my friends.