“But you don’t look sick.” If I had a dollar every time someone has said this to me, whether it be family members, friends, or strangers, I would be able to pay my way through college and well into grad school. Before getting too deep into this topic it’s important to gain perspective on what a chronic illness is. Simply Googling “What is a chronic illness?” only tells you that a chronic illness is a sickness with long lasting effects. What Google does not define, is how a chronic illness feels to those affected by them.
I have a chronic illness called Dysautonomia, which is an umbrella term for dysfunctions of the autonomic nervous system. You can read up on Dysautonomia here. Although the following paragraph is from my personal experience, there are so many chronic illnesses that I could not possibly speak for everyone.
Having a chronic illness is waking up every morning wondering if today will be a “good” day, hopefully you will feel some sense of normalcy. It’s being constantly frustrated with yourself for becoming exhausted after performing small tasks, like doing laundry, that never used to bother you but now leave you drained. It’s having to lie down so that you don’t pass out even though it feels like you have done nothing all day. It’s people who are uninformed, telling you that you don’t look sick or that everyone deals with these feelings and you should get over it.
Aside from dealing with the symptoms from having a chronic illness, the opinions of others can be an added burden. I have been called “lazy” by people who are close to me, people who, I feel, should know better. Some people with chronic illnesses spend most of their days in bed, while others are able to have full schedules. Most of the time appearing normal to the outside world. I force myself to have a full schedule, packed with a full-time job, classes, extracurricular activities and an active social life. My mom, who also has Dysautonomia, tells me that I am an inspiration for doing so much while being chronically ill. I certainly don’t feel inspirational, I feel like I need to prove to myself and others that I’m not lazy and I don’t need pity for my bad days. A consequence of this is people assuming that just because I have busy life, I am feeling better. That is rarely the case. I make the choice to make the most of the life I have, normal or not.
If you are dealing with a chronic illness, my best advice is to make the best out of both your good and bad days, even though it’s easier said than done. For those who live without chronic illnesses, do what you can to educate yourself before forming an opinion of what illness looks like.
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