People always comment on my clothes, my hair, my makeup, my shoes, etc. How I always look put together and presentable. No one can guess I’m sick and that’s my exact goal! It may seem silly, but for me, its important for people to see ME and not my sickness. The first time I meet someone, I want them to notice the small things, like how I always smile. Or the fact my eyes are a funky color. Not the fact my hair is falling out, I’m missing parts of my eyebrows, and my body is covered in bruises. “You don’t look sick” is what I hear all the time and that is GREAT! Who wants to look sick?!?!
“You don’t look sick”
This disease controls so much of my life from the gazillion doctors to the fact I can’t eat my favorite foods. It has even taken away a lot of my favorite activities! Every where I go, and everything I do I have to be careful not to over do it, think about germs, and make sure I get rest. That is not the most fun at all! I need some control to be in my own hands, and making sure people can’t tell I’m sick, is something I can control! That allows me to tell people when I’m ready, and if I don’t want people to know, that choice belongs to me too! When I’m having a bad day, the last thing I want is pity so I normally keep it to myself. Sure my hair and makeup look great and I’m rocking new clothes, but underneath that I’m miserable and in pain. But for a few minutes, I’m able to forget the pain. I can pretend I’m normal when people treat me like I’m normal! I can’t stand when everyone looks at me with pity and expects me to explain in front of all my friends how horrible I feel. That’s not me!! I know it’s important to share, but it has to be on my terms. I don’t want everything the defines who I am as a person, to know define a person with a disease.
This isn’t temporary, but something I have to live with for the rest of my life. That is what many people do not understand about an autoimmune disease is that there is NO cure, NO getting better, NO remission, NO end in sight! This is a lifelong disease that causes many people to become severely depressed on top of being very ill because it’s a miserable way to live, being sick EVERY day. Most days are bad, but others are just downright scary and you pray you will make it through the night. At only 29, and with 3 young kids under the age of 6, I prayed that many nights. It caused major anxiety!
Weird and alarming symptoms come out of no where, especially on your few and far between “good” days. A check in at the doctor turns into hours and lots of tests. This is my new normal and what I have to endure for the rest of my life. Autoimmune diseases are not temporary, there is no cure, and for most people they just get worse over time and you get MORE autoimmune disease. It’s one of the top ten leading causes of death, and yet there is hardly any knowledge, research, or attention brought to it.
So yes, my hair and makeup are always done these days, even when I’m super tired. No, I’m not shallow or high maintenance. I’m just a person fighting a disease that is destroying my life and trying to find the person I use to be before I got sick. I want THAT person to be the one the world sees first!