Spondylitis Communication 101: Saying No
Communicating about chronic health issues is challenging under the best of circumstances, when people are aware of the illness and believe that it's real, know how to pronounce it, and are on your side. Spondylitis patients and their loved ones have allies and a strong community of passionate advocates and other support, but they don't shadow us as we move through the world. Sometimes we need help finding the right words and the courage to say them out loud, especially when that word is “no.”
The guidelines that have helped me
Here’s a list of six guidelines that have helped to protect me for over a decade.
- Please keep in mind that you have choices about discussing your health, treatments, or abilities, in social situations. The social pressure to satisfy curiosity or keep people happy is real, but you're under no obligation to share more than you’re comfortable with.
- You're in charge of your health choices if for no other reason than you must live with the consequences. Don’t do something that makes you uncomfortable. You don’t have to try out the latest diet, cure, or hear out some random cousin's crackpot theories. I wish there were opt out certificates for all the devil's advocate nonsense happening out there. I'd print them up by the millions and send them to your house for free!
- Have a personal communication policy. Your policy should include who you’ll talk to, what you’ll talk about, where you’ll talk about it, and how much privacy is expected. Having this policy in place will boost your confidence and empower you to shut down uncomfortable or unwelcome conversations.
- Talking points are your friend. Public figures use preset phrases to keep on message. You can do the same, but instead of getting votes or donations you're letting folks know your rules. Here are a few of my favorites:“I don’t feel comfortable talking about my health in public.”
“I’m sure that you mean well, but we’re not having this conversation.”
“My doctor and I agreed that I wouldn't do that.”
“That hasn’t been my experience.”
“I’m so glad that worked for your cousin. Oh, can I see some pictures of your cat? I heard she was super cute!”
“I’m not allowed to mix anything else with my medication or treatments.”
“Cross contamination is a threat to my health. So no, I can’t have a little bite. It’s not safe for me.”
- Sometimes speaking your personal truth has to be enough. Social approval or validation about your health, treatments, or self-care plan is not safe foundation to build on. Some people just won’t hear you and that's no reflection on you. People's world views were formed well before you met them, and it's not your duty to win people over to understand your situation.
- Please regard yourself with gentleness and grace in mind. You've never done this before and you're still learning how it works. In fact, we're all learning. Researchers can't say for sure what causes spondylitis and haven't developed a single definitive test to diagnose this disease. Rheumatologists aren't always sure who has spondylitis or what treatment works best for which patient.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?