Spondylitis Communication 102: Telling Your Truth
Communicating about spondylitis can be one of the most frustrating parts of being sick. Not knowing what to say can cause self-doubt and damage relationships.
Early in my disease I often struggled with what or how much to say. Sometimes uncertainty about how my words would be received kept me silent. Being sick was bad enough, why did I have to spend time talking about it too? Spondylitis was always there, no matter what I said, and my pain and fatigue came through in my body language and mood. There's no perfect way to have spondylitis or to talk about it, but as much of the truth that's safe for you to tell is the best place to start.
Tips for speaking honestly about spondylitis
Many people perceive arthritis in terms of location or a vague sense of pain and stiffness. That's why they're quick to ask about your knees or hips, but slower to grasp issues with fatigue, mood, weakness, and motor skills. Here’s a list of pointers that have helped me stay more honest about how spondylitis effects my life.
- Consider being open about the up and down or surprise attack nature of your illness. You might want to mention the stressful nature of this uncertainty. Many people wouldn’t guess that that’s what’s happening under the surface.
- Be clear about what you can and can't do. Even supportive folks could misunderstand the details of your situation. It’s important to be precise about what's possible for you. I travel frequently for health advocacy. This might make it seem like I'm not that sick or that I can just power through the hard times with spondylitis. Not so fast! Every trip is physically costly, requiring at least one week of recovery time, eating meal prep food from my freezer, and sleeping twelve hours at a time.
It’s not mean to be realistic. You don’t have to sugar coat the truth for somebody else’s comfort or convenience.
Speaking honestly about fatigue
Here's something I might say when fatigue has me on the ropes, but doing something social is still doable.
“I’m too fatigued to walk through the mall.”
“That will take too much recovery time for me. Is there something else we could do, maybe with less exertion?”
It's okay to change your plans
Changing or canceling plans is part of having spondylitis.
Consider attending for a short time instead of for the whole event, but only if it's a good idea.
It's best to disclose the situation just as soon as you have “that feeling”.
Be clear that your body/illness is canceling even though you still want to be there. Offer to get together as soon as possible to celebrate the event.
Send an email or text reminding the host that you’re thinking of them and want the event to go well.
Being kind to yourself about your spondylitis
Please regard yourself with gentleness and grace in mind. You've never done this before and you're still learning. Even a medical professional would struggle with communicating something as personal and confusing as living with spondylitis.
How long was your longest flare?