Over the past month, in February, DSN has tried to highlight some of the rare diseases that are associated with Dysautonomia as we approach National Rare Disease Day. One of our members shares in her blog about what it is like to live with Gastroparesis, a disorder that causes your stomach muscles to not function properly.
I know you.
The woman who looks at her body and criticizes the few pounds she has put on. You are the woman who looks at the photo-shopped magazine covers of the pretty, skinny girl and wishes you had a body like her. You are the woman who wishes she were as thin as I am.
You say things to me like:
“You are so lucky you’re skinny without trying.”
“I wish I could give you some of my fat”
“What is your secret to being so thin?”
I smile back at you as you ask me these questions. I simply say, “thank you” because I am too exhausted to say more than just that. You explain to me that you have tried every diet known to man, but still cannot lose those last 5 pounds.
I know you because I was you- before I got sick.
You ask me what my secret is to being so thin. Well… I have a different secret I want you to know.
Girl, let me tell you something, being this skinny is not a blessing. It is not fun. And, it is most definitely not by choice. To you, I’m sure I look like a normal 24-year-old appearing to be thin and in shape, but if you looked a little closer, you would see a different picture.
When I see myself in the mirror, this is what I see:
I see the distinctive outline of each one of my ribs.
I see an accessed port that I have to give myself anti-nausea medication through every 8 hours to knock of the edge of my constant nausea
I see a girl who just threw up for an hour after eating a piece of bread.
I see a girl who daydreams about eating a full meal without getting sick.
I see a girl whose first instinct is to identify the bathroom in each public place she goes to in order to be prepared for when her GI symptoms strike.
I see a girl with a Body Mass Index that is severely underweight.
I see a girl with several vitamin deficiencies since she cannot adequately absorb nutrients.
I see a once curvy girl who has lost nearly 40 pounds in a few years.
I see a girl who once had a lot of muscle mass, who now barely has any
I see a girl whose doctors have threatened tube feeds if she doesn’t gain weight.
I see a girl who truly WANTS to eat, but physically cannot do so.
I see a girl who has to say “no” to going out with her friends to a restaurant because sometimes just drinking water makes her nauseous
I see the girl who spent last Saturday night stuck on the cold, hard bathroom ground during a family gathering because she could not stop throwing up.
I see a girl who takes over 15 medications just to be able to get out of bed each day.
I see a girl who has Gastroparesis.
It is not glamorous. It is not fun. It is painful. It is miserable. It is something I would not wish upon my worst enemy.
I know we are our own worse critics, so I want to know what I see when I look at you.
I see a beautiful, HEALTHY woman who is able to eat whatever her heart desires.
I see a woman who enjoys nights out at a restaurant eating some delicious food and having a few drinks with her girlfriends.
I see a woman who has fuel in her body from eating 3 meals a day, plus a few yummy snacks.
So no, I do not think you need to lose weight. I think you look beautiful. I think you look blessed. I think you look HEALTHY. I think those extra 5 pounds you so desperately want to lose is not fat- it is HAPPINESS.
When you look at me, you may see a girl who is “lucky” to not have an ounce of fat on her body, but I see a girl who just wants her life back. I see a girl who would do anything just to gain those few extra pounds of HAPPINESS back!
Follow Brittney on her blog at https://chronicallyimperfect.wordpress.com/