What I Wish My Loved Ones Understood About My Chronic Pain

Just like before I got ill, I still look forward to seeing my friends and family (for the holidays or otherwise) — probably even more so. But I must admit there are a few things I wish they knew.

I suffer from a multitude of chronic illnesses and have round-the-clock chronic pain. There are certain things that make my pain spike. I may seem whiny or “dramatic,” but please try to understand. I don’t want your pity, just your cooperation and understanding. Just to get here was a tremendous accomplishment for me. I’m already exhausted. Showering and getting dressed takes the majority of my energy and strength for the entire day. I am still just as excited to see you. In fact, probably more so than in the past, because now I am more aware of the preciousness in these moments. Also, I rarely get out, so this is a major social function for me! But, please try to keep cross-talk and multiple noises to a minimum. My illnesses already make it difficult to concentrate (if I’m having a hard time finding my words, this is all part of it). If you’re all talking over one another, not only is it extremely chaotic to me (I am normally alone all day), it literally affects my pain levels.

I know that my pain and illness make you uncomfortable, and the fact that I have to take medication is taboo. It’s a stigma I carry everywhere I go — literally. For your information, I would love to be able to be open about these things (which are a huge part of my life), at least with my nearest and dearest, without being subject to judgment or gossip. I actually want to be asked about my conditions. I know you don’t understand, so instead of avoiding the “elephant in the room,” just ask me! I promise, I won’t take this as an open invitation to complain all night. In fact, I’ll make a conscious effort to keep my explanations brief. Trust me, I don’t want to talk about it all night, either. But it is a huge part of my life, so just like I ask about your job and your relationship, ask about what consumes most of my time, energy and thought.

I take a lot of medications that make weight loss difficult, my ability to exercise is non-existent and three of my conditions affect my digestive system, as do many of my meds. I know I need to lose weight; you don’t need to point it out, even behind my back. Right now, I’m just trying to get by. Just because I’m eating the celebratory edible treats (just like you are) doesn’t mean I always eat this way. I know you’re well-intentioned, but if you’ve read about some new diet, treatment or fad, I promise, I’ve read it, too… and probably tried it. I know you’re trying to be helpful, but please, just keep it to yourself.

Don’t assume I don’t “do” anything. When I lived in Kenya, I learned that the standard American conversation opener, “What do you do?” is not always a polite question. We consider a person’s means of fiscal compensation to be a defining characteristic. In Kenya, income-based employment is so rare that asking the typical American intro question “What do you do?” is an insult. Nearly everyone gets up every day and “does” something to contribute. They might earn little to no money for it, but it doesn’t make it any less valuable and important. It doesn’t mean it’s not work. As a person who once prided herself on her independence, work and accomplishments, I am still a contributing member of society. So instead of thinking to yourself it’s unfortunate I cannot “work,” or that I seem like I should be able to hold some kind of employment, remember that it took almost all of my effort for the day just to get dressed and show up. The smile on my face is genuine, but the pain in my wavering voice is real, too.

Even though I am unable to commit to showing up to “work” every day, I do work. I work on researching, writing and speaking on behalf of myelf and others, and my writing is published at least once a month. Have you read it? It would mean everything to me if you did, and if you asked me about one of my articles or told me what you thought of it. If it wasn’t about pain, you likely would have.

Since pain is my constant companion, maybe you should try to get to know her. She sucks, but I’m stuck with her… kind of like your ex, who I made an effort to get to know, because I love you. Not to be snarky, I’m just saying…

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.