Unhelpful Questions And Comments
Unhelpful questions, comments, and suggestions are a painful part of having AS. Misplaced words and embarrassing situations can sting in the moment, but their cumulative damage more troubling than a casual remark made in passing. These little ambushes and microaggressions make it hard to just be in the moment and trust our social circles.
You can't teach others manners
It's not your job to help others learn manners. Developing a personal communication policy can help you decide in advance what you'll talk about, who you'll talk to, and when. This will make you feel more confident as you set limits.
Over the last decade, hundreds of people have told me the unhelpful things people say to them. Here are some highlights or lowlights depending upon how your perspective.
When are you going to have kids?
Our family won't stop asking us when we're going to have children. I don't know what to tell them. The thing is, I’m not sure I can go that long without pain management, but don’t want to look like a drug addict. What should I do?
First things first, your fertility is only up for discussion if that's what you want, and you can change your mind at any time. You, your partner, and your doctor are they only ones with access to the facts of your case. I hear you and affirm your legitimate concerns about managing your pain. Please remember, you don't owe anybody your fertility. If parenthood isn't right for you, that's okay.
Speak with your doctor to explore the risks and options for a safe and healthy parenthood, and make the best decision for you. A therapist can help manage the stresses inherent in any major life decision.
How come you have AS and we don't?
My family members keep embarrassing me with questions about my AS at family gatherings. Several of them have pointed out that nobody else has it. They keep asking me how I got it. What should I do?
You have a right to health privacy. You have no obligation to tell any of them anything. It's okay to refer them to The SAA or another advocacy organization. They're here to field annoying questions and educate the public. Keep in mind, these questions are often part of a person's effort to understand the world around them or express their world views. They might wonder if they'll get AS or another illness. They might be relieving some of this tension by bothering you.
So when will you get better
My family keeps asking when I'll get better. They point out that Phil Mickelson's medicine makes him well enough to be a professional golfer and some of my Facebook friends are running marathons with AS, so I should be better too. What should I say?
Many patients run into this kind of trouble. Outsiders think they know what they're looking at, but they have no idea. They don't understand that patients respond to therapies in different ways, each for their own reasons. I wish Phil Mickelson and all the marathoners nothing but the best, but these therapies can stop working at any time. It's probably a good idea to refer them to the manufacturer's education website or to an advocacy organization.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?