Chronic illnesses come with all sorts of undesirable baggage. I’m not referring to the symptoms that plague our physical and psychological afflictions. I’m talking about what other people (and often times ourselves) expect from those of us who live with diseases that won’t go away.
Most people tell us, “I hope you get better”; “I pray you didn’t have to go through all this”; “It is so unfair that you (being so deliciously sexy and all *cough*) can’t lead a normal life”… But then, when a chronically ill person does something fun, too many well-wishers offer their funny looks. Looks that suggest doubt… Eyeballs full of words that scream, If you were as sick as you and your doctors claim you are, then you would be home in bed feeling miserable.
The other day, I went to visit a sixteen-year-old girl who lives with Crohn’s Disease. One of my doctors asked if I could talk to her. The girl is very depressed about being sick. Our conditions are very similar—we both have Crohn’s and a few other chronic illnesses that seem to enjoy rotting our days. I spent a few hours with the girl and her dad. When I left her hospital room, the girl was super excited about going to a yearly autumn light festival in her hometown.
I’m going to the hospital in a couple of hours, so I called the girl to see if I could see her today. She doesn’t have to be at the hospital until tomorrow morning, so I called her at home—I got her some earrings that glow in the dark, which I thought would be a total hit at the light festival. Her mother answered the phone. And that… that woman told me that her “daughter is sick and the sick belong at home.”
I was shocked. Last week, when I talked to the girl, she was so excited about doing something out of the house. Her father was in tears, telling me how he has been telling her the same thing for months and months. “I tell her that I will make sure that we go to places where there are bathrooms, but I think she’s embarrassed.” He had been so happy. She had been so happy. Even the doctor had been grinning like a happy fool, after the girl and I talk.
All those thoughts were going through my mind, when my phone rang. It was the girl. “I’m sorry you got mom,” she said. “She doesn’t live here, but she visits twice a week and—”
Well, by the time we finished talking (some hours later *cough*), the girl told me that her mom is always making her feel guilty about going out and doing things. But her dad supports her all the way. And he has full custody of her. So they are going to the festival. And she will wear her earrings… and a t-shirt that says “My awesomeness is chronic.” I wonder who gave it to her. 😉
So, yeah, my Wicked Luvs… I opine that being sick doesn’t mean being dead or waiting to get there. I’m all for making my diseases mine. If we are going to be ill anyway, we might as well make the damn ailments as bearable as possible. And since bearable has never been enough for moi, I also advocate for stylish (and mythically hilarious). As suggested by my pill box. Isn’t my Pandora’s Pill Box the chicest thing ever? Well, I think so. And I highly value my opinion.
P.S. While we are on the topic of living life even when we are ill, let me remind you that Witches in Fiction 2016: Spelling Healing into a Rotting World is a week away. Have you joined? If not, follow the link to add your blog to the fun… the pre-party giveaway posts start in two days. 😉
P.P.S. I must get ready for the hospital. So I won’t proofread this post. Feel free to point out my typos. I promise not to hex you. Really. Hexing would be such a wicked thing to do *cough*.
P.P.P.S. Happy 13th! Yes, every 13th should be a holiday.