You’re 14 years old, soon to be 15, starting the ninth grade, and seemingly healthy. But the summer before school starts, you started to loose a lot of weight, even though you were always eating, and always drinking water. Nothing could cure the hunger and thirst, no matter how much you ate or drank. But that seemed normal for a 14 year old, right? What about the weight loss? Constant need to go to the bathroom? Not to mention extreme tiredness and falling asleep at inappropriate times? But it was SUMMER. Who doesn’t experience any of those symptoms when it’s hot out?
So school starts and you have to go to the office to get a safety pin because your pants are falling down. Rumors spread throughout school that you’re anorexic or bulimic. A perfect student, but you get detention for leaving class to go to the bathroom without permission.
Then one day you go to the doctor for a sports physical, which is required when playing school sports. You do the usual, pee in a cup and see the doctor. But the doctor comes into the room with a very grim facial expression. He doesn’t know how to tell you or your mom that you have an autoimmune disease that has no known cause or cure. But thankfully there’s a liquid drug you can inject every single day, multiple times a day, to stay alive.
It can’t be so bad, you tell yourself.
Much of your first six years of living with this autoimmune disease pass by quickly. Thankfully you are young enough to be on your parent’s healthcare plan. You don’t need to worry about access to the medication that literally keeps you alive, yet. Without it, you’d die, but that has never crossed your mind before.
Just like a lot of 18 year olds, you go to college. But unlike a lot of 18 year olds, you begin the fight for your life. In your second year of college, you have to switch health insurance because you’re not allowed on your parent’s plan anymore. But the processing times are way too long, and you start to run out of some of the essential medications to manage your disease. Without them, it is extremely dangerous. The college doesn’t know how to help, and doesn’t offer any resources. You cry in your dorm room because you don’t know how you’ll get the medication to stay alive. Of course your parents will help, but the costs to manage your disease are astronomically high.
For the first time in your life, you are afraid to die.
Fast forward a few years, twenty-five thousand finger pricks, and twenty thousand needle injections later, and you’re a seemingly normal 26 year old. You’ve since moved to Germany after studying abroad and falling in love with the country – and a man. You’re married, rent an apartment, and work full-time. You have great health insurance. Actually, everyone in Germany does because it is obligatory and a right, not a privilege.
After a few years of living abroad, you start to miss your family. So you begin the long and expensive process of obtaining a visa for your husband to move back to the US with you. The visa process takes over a year, and you’re impatiently waiting to get home. You’ve recently become an aunt for the first time and it’s hurting you to not be there. You want to be back to be with your family.
And finally, your husband gets a package in the mail that contains his visa. He is now legally allowed to enter, live, and work in the US.
This moment should have made you jump and scream with joy. But you don’t. Why?
You just read in the news that the president of the US wants to abolish pre-existing condition protection for healthcare.
At first you don’t believe it’s true.
Then reality sets in. You are leaving a country that requires all residents to have health insurance, a country whose health insurance companies are prohibited from making profit, and going to a country where the cost of healthcare is astronomically high and access is not a given, even with a good job. A country that may abolish pre-existing condition protection when trying to obtain health insurance.
So you discuss this with your husband. You realize you’re a young couple and have your whole lives in front of you. But if you move back to the US, you could be facing a lifetime full of stress and worry over the basic needs of your life. Having children could be out of the question.
Reality sets in.
You so badly want to move back to the US because you miss your family, but the decision is not so clear anymore.
And just so you know, you have Type 1 Diabetes, often referred to as Juvenile Diabetes. But that term isn’t used anymore because just as many adults are diagnosed with Type 1 Diabetes as children. Type 1 Diabetes is not a disease caused by an unhealthy lifestyle. It is autoimmune and has no known cause or cure. You will measure your blood sugar 5-10 times a day via finger pricks, and take insulin injections for every meal for the rest of your life. And by the way, insulin is one of the most expensive liquids in the world. And you need it to live, all because one seemingly normal day, your body decided to attack itself and no longer produce insulin.
You are the definition of a pre-existing condition.
P.S. This is MY story.