Spondylitis Communication 104: Your Personal Policy

Have you ever seen a high drama press conference? They tend to follow a formula. Something big happened and we know that lots of uncomfortable and repetitive questions are about to fly. The reporters clamor for facts. Photographers take hundreds of pictures like they're on safari. There aren't any lions or zebras. Even the meerkats are back at the zoo.

Wonder Woman's cuffs 

This is where a professional press secretary earns her money. She goes out to the podium in the midst of the clamor and flashes to win the press conference. She doesn't win it by getting everybody to agree with her. It's all about her mission, to carry out the organization's communication policy and strategy. Her confidence comes from this well-defined mission. This is how she beats down questions like she's wearing Wonder Woman's cuffs.

Some things can be private 

I've spent a significant portion of the last three years telling anybody that will listen about AS. Awareness is a core mission in my life, but I still can't tell you the perfect method for communicating about your health. I don't hide my AS, food allergies, or dyslexia. Anybody can find the broad strokes by looking at my Twitter or doing a basic search, but you might be surprised to know that very few people are familiar with the intimate details of my health. Only my inner circle know exactly where my AS is most active, why I don't have any children, or what treatments I'm willing to pursue.

Some people don't get it

I wasted too much time seeking understanding and acceptance earlier in my disease. Part of it was about being in my twenties. That's such a vulnerable time when we're sensitive to disapproval. 2002 was the dark ages compared to the current level of popular understanding of arthritis. AS was seen as rare. Many confused RA and OA. And there was a vague but pervasive notion of stress as causing many illnesses in women. Mind you, few people were willing to help reduce this stress. Women were supposed to just do something about it on their own, somehow.

Some people won't listen 

This process taught me that some people can't be what I need. They can't or won't open themselves up to what we're dealing with. I won't say that it's okay, but I have accepted this, for the most part.

Set boundaries and purpose

  1. Define your circle of respect and trust. Ask yourself: who needs to know about my health? Why do they need to know? Who makes me comfortable by earning my trust? Who has taken the time to learn about AS or seems open to doing so?
  2. Decide how much privacy is right for you.
  3. Go slowly. You don't owe anybody this deep dive into your life.
  4. You can change your mind.

Please tell me what works for you!

What helps you to communicate effectively about your AS?

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