9 Ways to Support Me and My Chronic Illness at a Holiday Party
The following is a list of “the directions” that come along with me and my chronic illness.
But first, a little background: I have gastroparesis (my stomach is paralyzed), and I get all of the nutrition (TPN) I need to stay alive through a port in my chest.
Most of the time, I don’t eat or drink much. The diet that makes me feel the least gross is saltines and Gatorade. I know, it’s pretty unusual. But if you read my nine tips, we can totally be friends at a holiday party!
1. If I ask to help set or clear the table, please let me. It keeps me away from the actual eating food part.
2. Please let me have my cell phone at the table. I’m not trying to be offensive. My phone is like my security blanket when I don’t know what to do with my hands (like at the dinner table).
Your hands are busy stuffing delicious food into your mouth while you talk to me. I really need to keep my hands busy, so doing meaningless things like taking pictures, liking Facebook posts or playing Candy Crush all the while still engaging in conversation with you is not me being rude. It’s my willpower and is keeping me from breaking down in tears because I just want to taste that Christmas ham.
3. When you ask me how I am, and I tell you I’m fine, please believe me, and don’t give me a look that says, “It’s me. You can tell me the truth. How are you really?” If I say fine, it’s because I am. For me, fine is a good day. If I’m not fine, I will tell you, and you will know. You will see the pain in my face.
4. Please eat and drink in front of me. I can’t take the guilt of thinking other people can’t enjoy food just because I can’t. It’s too much to handle. Tell me how good it tastes or how you made it. I’m still interested in food, I just can’t eat it.
5. Talk about yourself! Please! My life consists of having fake relationships with characters in books and TV personas because while the rest of the world works and goes to school, my full-time day job is to rest, which includes lots of books and TV. It can get pretty unrealistic, so I really do like hearing about your “regular old daily life.”
6. If I curl up on your couch or chair and you ask me if I want to go upstairs and lie down, please don’t force me when I say I don’t want to. You see, I’m exhausted, and I don’t feel good, but I don’t want to miss out on anything. So if my eyes are closed, you don’t have to whisper. You don’t have to move to another room. You don’t have to worry you are waking me. I want to hear what you’re all talking about, but I just can’t keep my eyes open right now. And if I do fall asleep, don’t worry, blowing a horn in my ear couldn’t wake me.
7. If I say I have to go make a phone call, or that I’ll “be right back,” or some other excuse, don’t make a big deal about it. I just need to go upstairs (or downstairs, or wherever your secret bathroom is) and poop. And I really don’t want to succumb anyone to the awful smell that is my butt.
8. If I do have to excuse myself and go lie down (depending on how well I know you) or tell you I have to leave because something came up, trust me, it’s me, not you!
9. If you don’t know what to talk with me about, ask me about my kids (unless you don’t want to hear me talk for hours!). They make me so proud. I could tell you anything and everything from the minute they took their first breaths to the tantrums they had before we got here.
Most of all, please know I wish you a happy holiday season no matter who you are, what you celebrate or how your story began, because you took the time to care.
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