What is the scariest symptom or complications of axSpa?
Getting an axSpa diagnosis and experiencing the symptoms can be truly frightening. In your opinion, what is the scariest symptom or complication of axSpa?
Not be ing able to walk without help
I hear you. Do you use any assistive devices like a walker? -Latoya (Team Member)
Falling and breaking bones for 3rd time
That is really frightening. Do you have someone at home who can help you if you fall, or one of those alert systems that allows you to call for help? if you haven't already worked on making your home safer. here's an article on how to reduce the risk of falls. Stay safe! Warmly, Kathy (Team member)
Not knowing when a flare will occur & when it does am I prepared to handle it.
That level uncertainty can be really frightening and it can make you feel like you’re constantly on edge. Having a little plan, keeping meds or supports handy, and pacing yourself can help, but it’s totally normal to feel anxious about it. You’re definitely not alone. -Latoya (Team Member)
For me it's every Dr you have to see after your diagnosis, that doesn't believe you, or somehow wants to change the diagnosis because of their "Dr arrogance", or refuses to prescribe you pain medications, because "it can't be that bad"........
I recently moved to a new city, and have to change my Drs, but even with my medical records in hand, it's like I'm under suspension of lying to them, or that my previous Drs were idiots, and couldn't be right........Oh my! That sounds like medical gaslighting at its finest. I am so sorry you've had to deal with that! Best of luck in your new home --a nd with your new medical team. All the best, Kathy (Team member) I hear you. It’s exhausting having to prove yourself again and again, even with all your records. It’s so unfair when your pain or experience gets dismissed. You deserve to be heard and trusted the first time. I’m really sorry this has been your experience. -Latoya (Team Member)
