Can I Say I Have Tourette’s Without Being Formally Diagnosed? (2024)

I’m in my 30s and have multiple motor and vocal tics that started in my early teens and have never gone away. As far as I can tell, I fit the diagnostic criteria for Tourette’s syndrome. My tics have gotten worse as I’ve gotten older, but while I tic pretty frequently in private, my tics are only minimally apparent in public (at most a sudden head jerk here and there, which most people just pretend not to see). My tics do not cause me sufficient physical or social distress to prompt me to get medical treatment for them. It doesn’t seem worth seeking out a formal diagnosis, which might require investing a lot of money and time in the American medical system, when I’m not looking for treatment.

My question is: Can I say I have Tourette’s without being formally diagnosed? I’m wary of doing so, given that self-diagnosis is looked down upon for medical issues generally and specifically in the case of Tourette’s; there has been a recent rash of people on social media falsely claiming to have it. But I feel that telling people that I have Tourette’s, which is a label many people recognize, would allow me to talk about my tics more freely and in so doing help counter the mild shame I have around them. It might even educate others on the range of severity with which Tourette’s can present, i.e., that it’s not always so noticeable. But I’m very concerned about seeming to co-opt a group’s struggles, and I don’t know if I need a formal diagnosis to be welcomed into groups for people with Tourette’s, either. What is your view? — Name Withheld

From the Ethicist:

Some diagnoses have depth. We can be told that we have a particular kind of cancer, at a particular stage, of a particular type and subtype, and with cells that have or don’t have particular receptors. There’s a lot of treatment-guiding information there. But a Tourette’s diagnosis doesn’t have depth like that; it just says that someone has certain symptoms (like those you’ve mentioned) and that they started before the person was 18. Diagnosis isn’t a matter of scans or blood tests, save when other explanations must be ruled out; it’s a matter of the behavioral history you report. So why not bring it up with a health care practitioner? Despite your fears about time and expense, a diagnosis needn’t be a drawn-out process. Though you don’t mention any other complaints, many people with Tourette’s syndrome have co-occurring conditions, which clinicians might be able to help with. And on the off chance there’s some medical reason to think it isn’t Tourette’s syndrome, it’s best to know that, too.

In the meantime, you shouldn’t worry about the social media phenomenon — ‘‘TikTok Tourette’s’’ seems to be largely a matter of impressionable adolescents. Nor should you worry about co-opting a group’s struggles as an outsider; because the condition refers to a set of symptoms, not an etiology, if you share these symptoms you aren’t really an outsider. On an online forum, you can simply describe your tics. But please bear in mind that consulting with a clinician doesn’t commit you to anything you don’t feel you need.

A Bonus Question

My neighborhood Chinese restaurant has excellent set meals, which are discounted by one-third for weekday lunch sittings only. The best of their soups are heavenly affairs, being of a better standard than the famed offerings I have enjoyed at Singapore’s hawker stall centers. These lunch specials are cash-only deals; I suspect that tax evasion could be the incentive for the owners. Such financial misdemeanors mean substantially reduced tax payments needed for community services. Reporting the restaurant to the authorities risks the establishment being forced to close, with the best-case scenario being a warning and a hefty fine. I am worried about losing our neighborhood ‘‘meal ticket’’ if I report the owners. What is your take on this matter? — J.T., Brisbane, Australia

From the Ethicist:

Is it possible that those community services tend to be supported by the local government via municipal property taxes? Either way, I agree that businesses should fork over their fair share to the treasury. But Australia has a decent number of tax inspectors, the restaurant’s cash- only policy isn’t a secret and, for all you know, the restaurant is simply trying to avoid credit- card processing fees. If you’re made queasy by the very possibility that this restaurant’s tax returns aren’t entirely on the up-and-up, maybe you should eat somewhere else.