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.
Readers Respond
The previous question was from a reader who was grappling with a heartbreaking family secret. She wrote: “I worked part time for my granduncle’s business when I was 13 and 14. There were many times when we were alone, and he sexually abused me. … In my late 20s, while in therapy, I began to realize the impact those experiences had on me. I told my husband and my parents what happened all those years ago. I received the essential support I needed from my father and my husband. But my relationship with my mother became fraught. When I shared the events with her, she told me that the same man sexually abused her when she was a teenager and that she never told anyone. … She said that because he was an old man when I worked for him, she didn’t think he would still do the same things. She also asked that I not share this information with my father, fearing that he would blame her for not protecting me. Knowing that the truth might destroy their marriage, I have remained silent about my mother’s experience and have kept it a secret at her request. … I am now in my 50s, my parents are in their 80s and the secret is still buried. My dad continues to ask why I don’t spend more time with my mother; it clearly bothers him. I wonder if it is time to share the secret with him.”
In his response, the Ethicist noted: “I’m so sorry to hear about what you’ve endured; it clearly took courage to tell your family about what happened to you and to seek therapy to deal with its effects. Your mother’s behavior, meanwhile, can only have heightened your experience of betrayal. In sorting through the issue of disclosure, you should give serious weight to your own well-being. … I do think that, as a rule, we should know the important truths about our partners. But when we’re looking at an octogenarian couple, other things matter, too. Perhaps knowing the truth could have helped your father shape his life 30 years ago; now, as he approaches his final years, it might cause him more pain than it’s worth. I also worry that whatever feelings of relief you experience after unburdening yourself would be fleeting, while your father and mother’s different forms of aggrievement might not be. You’ll have to decide, in the end, whether revealing the truth will help heal your injuries or deepen them.” (Reread the full question and answer here.)
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I agree with the Ethicist’s response. As a child, I was abused in an eerily similar case, and I suspect that the abuser did the same to my mother in some way, but I never learned more about it. As an adult, I began therapy and made the decision not to tell my parents about the abuse, choosing not to upset them in their last years. I don’t think that choice impeded my progress, and deciding to tell them might have opened new traumas, depending on their reactions. They are both gone now, and I don’t regret that I didn’t confront them. It wouldn’t have helped me heal; therapy is the bigger help. — K
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I am a retired therapist, and I have worked with victims of sexual abuse. The letter writer’s mother did her daughter a grave disservice and furthered the harm by insisting on keeping this information from the daughter’s husband. I think shining the light on this secret is the best way forward. — Ellen
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As a clinical social worker, victim advocate and director of an elder-abuse program in an abuse and trauma agency, I would say a few things to the letter writer. Abuse dynamics within families are complex. So not only is the letter writer distraught about having been abused and experiencing the harmful and lingering effects of the abuse, she also feels betrayed by her mother’s failure to intervene. On top of all of that, now her mother has put her in the position of having to distance herself and behave disingenuously toward her father, and to keep an ugly secret. Despite how difficult this situation is for the letter writer, her mother’s secret is hers to disclose. — Jacke
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I agree with the Ethicist’s response. I was sexually abused by a family friend when I was 11 or 12. I told my mother 30 years later (after my father passed), when I discovered that this person had also abused his granddaughter. My mother’s only response was to say that it was a good thing I never told anyone because my father would have killed the man. I was shocked by this response. While I didn’t need her empathy, I wasn’t expecting her complete disregard for what happened to me as a child. My advice to the letter writer would be to examine her motives for disclosing this information and to prepare for any and all responses. — Gigi
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I appreciate the Ethicist’s overview of each possible choice offered for a resolution. I would like to offer this: I never told my parents about the abuse I suffered from my sibling and from a teacher. In my own quest for resolution, my amazing therapist posed this question to me: “What are your expectations for telling your family?” I had to dig deep within myself to truly understand not only what I wanted from disclosure but also what I needed and expected to happen. Then, too, I needed to consider the outcomes if none of that happened. Through further counseling, I have come to terms with not telling my family. I realized that it was my abusers who owned the guilt and shame — not me. My abusers are still living, so rather than confront them personally, I wrote a letter to each one. I gave “it” all back to them. Even in sending the letters, I explored that same original question posed to me. I was doing it for me; I deserved to get it off my conscience. I realized I would never get an apology, so I stopped looking for one. It was a long, hard journey to get to where I am today, but so worth it. — Thom
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