Official vs Unofficial Diagnosis Thoughts?

After a lengthy and confusing journey (I'm sure many can relate) I finally received a diagnosis for hEDS. My rheumatologist gave me the option for either an official or unofficial diagnosis, citing that for many, the risk of discrimination from insurance companies or potential employers outweighs the benefits that might come from having an official diagnosis. At the same time, I'm sure an official diagnosis could be useful for accessing government services and for medical practitioners to more effectively assess me in the future.

I'm wanting to know if anyone here has experiences related to obtaining an official or unofficial diagnosis? What did you ultimately decide upon? And do you have any regrets one way or the other?