When you have a lot of medical problems, your bag is heavy. You carry around the meds you have to take every day, pain relievers, an Epi pen, an asthma inhaler, meds you might have to take if something happens, the new meds you were given for your new condition, etc.
As mine got worse and worse, and my bag filled up with more and more pills and liquids, I began to resent my own body. Why was I made so faulty? Why was I so fragile? Why was I so susceptible to health problems? Would these itches and rumblings and headaches and symptoms ever go away? Would I ever not be embarrassed? Would I ever feel normal again, the way I remember feeling as a child briefly — running through grass, eating dirt, falling asleep with ease? Was this my life now and forever?
The explanations. Oh man, the explanations. Why can’t you hang out? Why do you all of a sudden have to go home? What is wrong with you? You’re getting surgery again? You can’t come into work because of why? Are you freaking out? It can’t hurt that badly. Take an Aleve. And all the while, it does hurt that badly. You hate to seem like an overreacting baby but in the moment, you really are scared you might die.
And you feel shame. Shame for being so vulnerable. Shame because everyone, regardless of who you trust or want to see you this way, has the potential to watch you fall apart. Strangers on the street who try to help, potential lovers who are freaked out, the doctors who tell you there’s nothing wrong with you or that they simply don’t know what’s causing this chronic illness. They poke and prod you and test you and observe you and there’s nothing they can do to help. You’re just one of those sick people. You didn’t do anything wrong. This is genetic or random or someone upstairs hates you maybe. That last one’s probably right.
You don’t want to feel sorry for yourself so you make jokes: “My bag is like a pharmacy, I swear. Do you need anything? Ha Ha Ha.” How did this become your life? I remember when I used to do things. I did whatever I wanted. I think I was happy? Now I’m just “sensitive.” I tell my doctor that I get side effects from medicine a lot. That if anything I take is strong, I’ll be throwing up for days. I stop drinking coffee, my favorite drink. I stop working as much because of chronic migraines. I struggle to eat.
When you are sick all the time, you falsely believe that you are not like other people. (In some ways you are different.) That you will never have fun, never be carefree, never be able to run off and go camping or skip to Spain with no luggage — because you need your medicines. All of them. You feel boring and trapped and stodgy and grounded. You didn’t choose to keep getting sick. You only have a certain amount of control over what is happening to you. We have to stop blaming ourselves. We have to stop letting other people’s ignorance of our situation get us down. We have to find a way to live.