Some of you may be thinking, “cognitive dissonance much? A month ago you were warning us not to get a diagnosis in the US, and now you’ve gone and gotten one!”
I know. It looks strange, at first glance.
Yes, the potential threats I described last month are real. That hasn’t changed. Nor have I had a change of heart, suddenly deciding that the threats aren’t so dire after all (they could certainly still be).
So why and how did I do it, and what options does one have if they’re an American seeking diagnosis?
There are two possible options that I know of…
The first option is to go outside the US. I do still plan to do this when my suddenly-bleak financial situation improves. (I was going to get two opinions at once, but then realized that money was tighter than I thought and had to get one done at a time, going first with the entity that responded the fastest). The international option only works if you’re only seeking personal confirmation or “closure” of some type, and not needing accommodations for work or school (depending on the laws in your state, a topic about which I’m clueless; definitely check on this for yourself or consult with someone who is familiar with the current situation in the US (see the post linked to above), knows the specific laws in your part of the country, and respects your wishes).
The second option is to find a provider in the US and use a pseudonym or what I’ll call a “semi-pseudonym”. (A “semi-pseudonym” would be akin to a realistic nickname, an alternate spelling of your real name, a maiden name as a last name, etc.) This will only work, however, if you pay out-of-pocket, without using insurance. But it could be a way to get an official diagnosis that could grant you accommodations or services you might need. Make sure you leave the Social Security Number blank on any intake forms/paperwork, if at all possible. I used my maiden name and my specialist didn’t ask for a Social Security Number or even my address. He never asked for identification, such as a driver’s license. He respected my desire for semi-anonymity. And yet, he was still able to render an official diagnosis that would indeed grant me accommodations, etc.
With either option, health insurance (or any other third-party payor) can’t be involved. (As soon as a third-party is called upon to contribute, your records may be released to that entity, along with the diagnostic and other information contained in those records. It’s no longer strictly between you and your provider.)
With either option, I recommend being specific about your wishes, and asking direct questions before proceeding. Be sure they’ve answered your questions just as directly, and that you understand all potential present and future ramifications to submitting to their process. You might have to call around (potentially pretty extensively) to find someone who is a good “fit”.
But it might be worth the effort, if you’re in a similar boat as I am, wanting a formal diagnosis but strongly wanting to avoid ending up in any databases or risk having the information get into the hands of someone you may not want to have that information (such as an employer, an educational institution (it’s true; sometimes disclosing to a professor can backfire big-time), or perhaps other healthcare providers).
I’m happy to answer any questions, to the best of my knowledge. To contact me, simply Direct Message (DM) me on Twitter (@TheSilentWave), or message my Facebook page (“The Silent Wave Blog” – I know–I’m creative lol) 🙂