You know, people joke a lot about eating disorders. People laugh about the girl they knew in high school who ate only ketchup and water for lunch. They laugh about how skinny the celebrities are on TV, and how they look, like, anorexic or something. When I talk about my sister having an eating disorder, people will often crack jokes. Jokes about how they could be anorexic too if they didn't eat so much. Or how I should send my sister to live with them, because they eat all the time. Or how they'll just force-feed her and solve the problem. Want to be let in on the real joke about eating disorders? Want to have a laugh?
I have spent the past 6 years? 7 years? 8 years?... (how long has it been now?)...worried about my sister, and it's not what you think. It's not that they "just don't eat." It's not about food. It's not that they "just want to be skinny." It's not about wanting to be the next great cheerleader or teen idol or model. It's not even about wanting to get the latest cool size 0 jeans from the latest coolest store.
For me, anorexia has meant watching my 16 year old sister, who is taller than I am, wear children's clothing in a size 10 or size 12. It means hearing how frustrating it is to find clothes without a Disney character on the front--about arm sleeves and pant legs being too short, when everything else fits. It means general frustration over clothes not fitting, analyzing costumes for plays and singing performances, and never hearing the end about how "ugly" she looks in any particular outfit.
Anorexia has meant having my sister have things taken away from her--like dancing--that she loved, because she wasn't at a safe weight to continue the exercise once a week. It has meant her giving that up completely because she wasn't willing to gain the 4 pounds that would have made it safe.
Anorexia means screaming matches. It means having food thrown at me. It means watching my father have food thrown at him. It means watching my father carry my 14 year old sister to her room because she was completely out of control. It means having my sister inpatient for weeks and weeks, and my father restraining her to keep her inside the hospital. It means leaving her in a locked ward and only being able to see her when she eats. It means not being able to see her.
It means seeing women who are at home in the locked ward. Women who look like skeletons. Women with nasogastric tubes so they can be force-fed. Anorexia means seeing a skeleton of a teenager sobbing that she doesn't want to die. It means knowing that young woman disappeared from the inpatient unit, going to the hospital, and knowing that she did not return. It means hearing that someone on the ward has told my sister that she is going to die. It means being 19 years old and sitting and holding your 13 year old sister who is terrified of dying. It means holding her, and being in so much pain, you don't even realize you are crying.
Anorexia means osteopenia at age 14 and osteoporosis at 16. It means weight checks and blood tests and bone scans. It means being 18 and not having your period. It means having no hips and a flat chest. Anorexia means urine tests--proof that she is burning muscle because she has no fat in her body to burn. It means a broken ankle that shouldn't have broken if her bones were strong. It means dehydration. It means looking at her hip bones and her spine. It means no butt or thighs.
Anorexia is dropping my sister off at the door of the supermarket because we don't want her burning the calories to walk across the parking lot. It means telling her to stop shaking her leg, to stop bouncing, to stop trying to burn more calories.
It means medications: anti-anxiety, anti-depressants, anti-psychotics. It means failed medication treatments because she didn't weigh enough for them to work. It means non-compliance with medication treatments.
Anorexia means watching her eat the same foods every day for years. It means watching those foods dwindle further and further until they include only a few items, eaten only from a paper towel and a select small bowl. It means watching foods picked apart, mashed, pushed, stirred, swirled, tossed, flipped, ripped, and chopped. It means disaster if we don't have the right type of bread in the house. It means she won't eat anything she hasn't made. It means never eating out. It means watching my sister refuse invitations to birthday parties and get-togethers with her friends. It means having her refuse to invite people over. Anorexia means never eating at holidays. It means watching her cry before holiday meals because she doesn't even want to get a plate to pretend to eat.
Anorexia is relatives and friends saying "but she looks good!" because skinny is good. It means needing to stop myself from yelling at them, explaining that it's not about how she looks. It’s being 18 and turning my back on relatives, walking away, because I know if I open my mouth I will either cry or yell. It means needing to find the words to explain that burning muscle isn't healthy. It's listening to the same relatives and friends tell her she looks good anyway. It's feeling physically ill as you watch her face glow at that compliment.
It means control. Anorexia controls my entire family.
Anorexia means watching her face light up every time she loses another ounce.
Anorexia means being 18 years old and looking into my sister's bedroom before I go to bed, just to make sure she is still breathing.
Anorexia is knowing that the mortality rate is 5-10%.
Anorexia is knowing that she will likely be hospitalized again.
Anorexia is knowing that she will struggle with this for most, if not all, of her life.
Anorexia is not being able to do anything about it. It means watching someone you love hurt themselves. It means standing by helplessly, knowing she is the only one who can do anything to change it. It means knowing that she is the only one who doesn't want to change.
Being a sister to someone with anorexia means no one caring about your college graduation, because they're too busy running from the graduation to the inpatient unit to see her. It means feeling your stomach clench in fear every time your friend says "these jeans make me look fat..." because you're terrified you'll have to watch someone else you love fade into near nothingness. It means talking for hours to parents about what choices to make, offering perspective, telling them they are doing the best they can, and assuring your mother that she IS a good mother. It's holding your other sister in the fear that both of you share, and needing to comfort her anyway. It's missing final exams because your mother is having a "break down" and needs someone to talk to, needs someone to go with her to buy a toothbrush for your newly hospitalized sister. It means never being able to fully explain just how much it hurts to hold your baby sister as she sobs, uncontrollably, and has no words to tell you why.
Anorexia is praying for a light at the end of the tunnel. Praying for a way out. Praying that one day, this will all make sense to her and she will be able to help herself. It means praying that she will take her medications. It means praying that the medications will help. It means praying that today, she will eat. It means praying that she will have enough energy to make it through the day. It means praying that she won't throw another can of tuna fish or gallon of milk or apple or box of cereal at someone. Anorexia is praying for a cure, and knowing there isn't one.
Anorexia is an enormous battle I witness but cannot fight.
Anyone want to laugh now?