How to Explain to Friends and Family
I’m sure I’m not alone in this but when I was diagnosed with AS I had no clue what it was or meant and to be honest I still have such a hard time explaining what it is. People definitely get annoyed with me and when I’m done explaining what it is to the best of my ability that person has lost interest and OKs me to death.
Invisible illness is hard and pain varies from day to day (for at least me anyway) and it’s hard for people to understand what you are experiencing. I often say it’s like PsA but different.
In order for my injections to get approved they actually changed my diagnosis from AS to Psoriatic Spondylitis (I think anyway). Now I feel confused is this my new diagnosis or did they just re name it only because of insurance?!
We are our best advocates
I help others to advocate for themselves and lose track of myself in there. Knowledge is power. I know I need to do some more reading and research about this condition but as most may know that on your “good” days, thinking about your condition is the last thing you want to think about.
Am I the only one who finds AS incredibly difficult to convey what it is and have people actually understand?! At this point, people I know have heard me talk about it but am I doing justice for the AS community?
Sharing so others feel less alone
I need to take my own advice and learn so that I am able to educate. Navigating this condition and sharing my story with others has not been easy but I hope that even one friend can explain it someone else.
As a former teacher we used to say that if a student truly understands the topic (in this case AS) they can explain it in their own words using to someone else. I guess maybe that’s my hope for my family & friends. It starts with me!
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