ADD/ADHD: Make it a Secret

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Keep Your ADHD A Secret

If you discover that you have ADD/ADHD, and seek treatment, do keep it a
secret. Small town or metro DC it's all the same, most people you know or work with, just don't get it. And the medical community, the ones that should know, are often the worst naysayers. Metro and small towns are all the same.

This world, my friends, is significantly uninformed about ADD and awash in gossip. Too many make ADD a joke or a character flaw. My easy suggestion, don't fight it, just don't announce your ADD problem when more than 85% of them don't get it. Why? -Will tell specifically in a moment, in the meantime let me tell you a humorous story.

In my DC practice, high end Metro DC in Reston, right down the Dulles Freeway from Tyson's Corner, I had a young girl in from Atlanta for a SPECT evaluation. She was a socialite [in adolescent terms a “sosh”] about 13, cute, courteous, with makeup in place… and she did not want to be seeing a shrink, looking at her brain.

I knew immediately the implications of her going home with an ADD diagnosis or a prescription: Uninformed negative remarks from the crowd. Adolescents, many teachers, and parent's friends can be merciless, and she wanted to continue to *look good.* She was already looking good, and it was working, why mess with success? She already knew what I am telling you here. She had seen what happened to her friends.

I quickly made it clear to the adolescent and her parents that I understood her problem, and immediately began the process of discussing the subject of silence on this meeting. I agreed with her worry, and the real problem of taking meds, announcing to anyone you're taking meds, or in any way going public with her evaluation. [Incidentally, her left basal ganglia was on fire on both the baseline and concentration deep scans, showing how worried she worried about others.]

This is what I said in 2007:

“Now that we have finished the evaluation, and before your family flies back to Atlanta, I'm going to suggest that we do one simple bond on this confidentiality matter together… We should step into the kitchen, and take a blood oath that we will not talk with anyone back home about this meeting!”

Her father, a true sport, and caring guy, determined to help his daughter in any way, got the picture of the value of silence and said: “Is now a good time?”

Her quick shot back…”Daddy he's only joking!”

We all had a laugh, but they clearly got the message. By the way, she did very well, did become cooperative with treatment when at first it looked like the entire experience would be an expensive bust. She saw her brain, saw the clear clinical presentation of her symptoms, and really appreciated the “silent treatment.”

She already knew much of the following reasons for keeping it to herself:

  1. ADD is often considered a joke, not a medical problem
  2. If you do well, you don't get credit, the medication does
  3. Special ADD attention diminishes your competitive/leadership chances in group activities
  4. You will be the subject of negative gossip
  5. Perfection is the standard, ADD appears as imperfection
  6. People think ADD is ADHD, and can't trust the individual, fearing they will start throwing bottles at passing cars
  7. Some doctors work the system, seeing patients monthly for med checks when the standard of care is only quarterly after they are balanced, very regrettable
  8. Some worry about later insurance implications since managed care diagnostic codes track you for the rest of your life… these are often medical families who live with medical information access everyday – privacy is limited in managed care – the money with managed care is against privacy.
  9. Too many medical professionals remain steadfastly uniformed, reading the newspapers instead of the research – and they gossip about ADD as if they are in a 7th grade club. This challenging medical pattern is frequently reported in my office, and is directly harmful to those with ADD. I don't comment on trauma surgery, why would a surgeon comment on psychiatry?

Conclusion: If you are a sosh from Atlanta, a steel worker in NYC, or an executive from LA, it's all the same:

  • Silence is golden.
  • Take full credit for what you do with treatment
  • You did the work, you supplied the motivation
  • You supplied the brains

Blood oaths are not necessary if you really think about it…

cp

10 Comments

  1. Browning,
    You, my man, are the reason for this post. Sorry to hear it happened to you, hate the condescension, but do think we can collectively clear up much of it if we just become more precise about meds, more scientific about treatment.

    If ADD/ADHD Medication treatment is kinda like throwing a bucket of paint at a barn door, then who wouldn’t be suspicious about the diagnosis and the whole process.

    As I’ve said elsewhere: Dramatically paradoxical: We’re treating a deficiency of attention – without paying attention!

    You really should sign up for notification on my new book on these matters, you are very likely in there.

    One of the stories in my book is about a double PhD [in Physics, Atomic and Plasma] and he also has a Masters in another high tech field… and is over the top with fixable ADD problems. Let me see, don’t those deep degrees mean that he doesn’t have ADD? Duhhhh…

    Do sign up for the book, you will love it.

    And the SPECT idea, really interesting, – don’t know of a paper on that combo.

    Thanks for your note,
    cp

  2. Browning says:

    I tried the Tomatis Method with excellent results! I would be curious to do a SPECT scan before and after…now that would have been interesting! Medication is very helpful as well. As a doctoral candidate, I actually had a professor tell me that my accomodation request were unheard of at the doctoral level! His condescedning attiutude is so common. We have to educate the world partiulary educators! I try not to wave my ADD around, but seriously people are so ignorant about it. Its sad, we’ve come so far but mental health and learning disabilities are still in the dark ages as far as acceptance and treatment.

  3. Angie,
    Thanks for your comments, and a long distance high five for your attitude – I confess I may be a bit jaded by all the shaming I have seen. Those with the less obvious forms of ADD have the most problem with blow-back. Those are the folks that have to live down the suggestion that the real problem is laziness. “You don’t have that ADD thing, you, my friend, are just lazy.”

    These remarks are painful, and often heard by those challenged with ADD/ADHD problems.

    And, don’t get me started… guess what happens if you have medication problems: everyone from Aunt Tilley to the local grocer is an ADD expert! -And then the water really gets muddy on my end, because I’m not only treating and dealing with the observations of the patient, but the guesses, fantastic speculations and gossip so prevalent in the community. Maybe on some level I’m just being self protective!

    With some families and some situations discussing ADD is, as you point out, quite helpful. With adults and adolescents the hill is much steeper to climb. With complex, often-overlooked, presentations, there are no simple answers, and the jury of public opinion remains deeply skeptical of the ADD unknown – thus my book.

    My most fundamental point: Think about the consequences of *full disclosure.* Your diagnosis is really no one else’s business, and telling others about your issues often invites counterproductive comments – so as we used to say in the Boy Scouts: Be Prepared.

    Good job on your end!
    cp

  4. Angie R says:

    This reminds me of Don’t Ask Don’t Tell in the military. I think we have had enough shame around ADD, really! Let’s focus on all of the creativity ADD people have and images of Einstein, or brooding artist come to mind. By speaking to others about it, we can find more local resources, find common bonds, discuss experiences here at our schools and give our children a sense of belonging to a unique group of creative thinkers instead of cookie cutter 9-5, cube loving, data entry drones. Our world is so much richer because of all of the variations of humanity in race, creed, sexual preference, color, and multiple intelligences.

    I have my ADD son who is not very good about remembering vowel combinations. Ask him What John Adams last words were or the three major countries that contributed to WWII. People are marveled by his Trivia skills. He even has created his own comic book series. His complicated personality attracts many people to him. Even adults lie to pick his brains to hear is unique point of view.

    My other son has an easy time picking up vowels, numbers, etc. He does not have ADD and we appreciate the easy time teaching him. He has plenty of friends and is well liked. He has other intelligences that are different (like picking up languages) that are equally impressive.

    I thank God for my two unique treasures. They are both teaching my husband and myself priceless life lessons.

    I understand your point of view, but I disagree with it.

  5. Bryan,
    Thanks for the link to your post over at ADDerWorld.com – appreciate your perspective!

    It’s a strange world in ADDland, as so many have no idea what to think about the people or the problems associated with ADD/ADHD.
    cp

  6. Bryan says:

    As much as I don’t want to, I have to agree with this article on a lot of levels. The news reports this week about people with ADHD missing up to a month of work a year just makes things worse. I have never missed work due to my ADHD and I don’t know if I agree that ADHD itself is to blame in all cases. If I get a cold or a fever, then that is what it is, not because I have ADHD.

    I’d like to share an article I wrote on this subject a while ago after I recieved an email that I would be destroyed for writing about ADHD in the open:

    http://www.adderworld.com/blog1/2007/12/29/if-you-have-add-or-adhd-and-write-about-it-they-will-destroy-you/

    Thanks,

    Bryan

  7. Gina,
    Words of wisdom, much appreciated. Nothing is black and white, and with those close by, I totally agree…no reason to keep it that secret. I just see so many people who don’t get it – many do create a self-defeating attitude by disclosing and making everyone a part of their personal solution.

    I do anticipate change, and want to give people an honest and easy answer when others ask about that change – so they won’t have to regret divulging because they feel so much better.
    Thanks!
    Chuck

  8. Gina Pera says:

    This is such good advice! It goes counter to everything we’ve been taught–since the 1970s, anyway–about openness and honesty and letting it all hang out.

    But I so agree.

    Discretion is a must–unless you have very tough skin and are, for example, independently wealthy and don’t need a job. Until the person with ADHD (or the parent of a child with ADHD) knows how the news will be accepted by the recipient and what repercussions it could have, it’s best to play close to the vest.

    I know some adults with ADHD who did disclose to a boss or co-worker, with excellent results. But these persons weren’t hanging onto their jobs by a thread, either. They just needed some minor accommodations.

    For others, it’s been an invitation to employment, because such a disclosure can been seen as a liability to the company.

    When it comes to personal relationships, though, I don’t know…. I think a few weeks or months in, disclosure is important. Especially since some people with ADHD exhibit the hyperfocus courting behavior that changes only after a year or two–or after marriage or the baby or….

  9. Jason,
    You covered the cognitive, thinking, part of ADD quite well. So many have thought for years that the only problem was one of over-activity, and missed the problem of over-thinking, of so many thoughts it’s hard to get a plan in place, or a conversation on track.

    Attention is the thinking part, and activity, the hyperactivity, the action part, is responsible for only 20% of the ADD/ADHD problem.

    And yes, decreased dopamine is an issue, and predominantly dopamine in the prefrontal cortex. This decreased activity can be seen quite well on SPECT scans, and at a recent Society for Nuclear Medicine they were discussing tagging dopamine transporters with isotopes to study the effectiveness of meds.

    Science comes to ordinary conversation and flowers in the afternoon!
    Chuck

  10. Jason says:

    hello;
    I am thankful for your insight.
    I have a question. On topic but not in line with your entry here.

    Recently, news has reported regards the dopamine deficiency in the brain of the ADHD individual. And something regards effects in the reward area of the brain.
    http://www.reuters.com/article/newsOne/idUSN03330661
    I have always kind of thought that AD was better describing the deficit of attention given. Seriously, well at least the perceived deficit. Perceived by the ADHD. I am beginning to see this with myself and my children…… For instances, If you love someone then you might send flowers to a normal person and that person feels satisfied, grateful and believes the declaration of love. BUT with The ADHD, It takes the gift of a truckload of flowers and the renouncing of one’s family to achieve the same exact results, in caliber and form. I think I saw this most as a teen. I am not certain that I am being clear, and I am in a hurry as it is late. I have more to add to this but I will leave it just as it is for now and wait to see if this is an issue you have any thoughts on. As i said I have children and on account of that I am beginning a study myself. (with my mother and others from my youth) TO try to help the educators of my children to better understand how to help them.
    In summary; I believe that there may be some connection to the reduced amounts of whatever chemicals in the parts of the brain associated with reward and the acting out of people with ADHD. Well thats it in part at least