Deal With It

The Stigma and Empowerment of My Attention Deficit Disorder

My meditation guide asks me to envision a happy place. I imagine tall ferns swaying in the wind and a cliff's edge that gives way to the vast ocean. Suddenly a large mechanical drill rips the setting in half. This random shift is what having attention deficit disorder (ADD) is like for me.

Want to see a person who lacks impulse control? Try to schedule a meeting with me, and I’ll probably leap at the chance. During our meeting, our conversation will go off topic. The reason this happens isn’t because I’m a weird guy. It’s because the conversation isn’t interesting enough.

No offense but I’m bored.

ADHD is the term used in the 2013 book, Diagnostic and Statistical Manual of Mental Disorders 5th Edition (DSM-5) to generalize the many subcategories of ADHD. In this article I will refer to my own disorder as ADD as I do not exhibit the hyperactive aspect nearly as much as some of my fellows. You won’t find me disrupting class by kicking the chair of my classmate.

“People with ADHD tend to have lower levels of dopamine production in the brain,” says Dr. Ryan Davidson, a neuroscientist from the American Chemical Society. The chemicals dopamine, norepinephrine and serotonin all increase activity levels in the brain and without them persons would live in a fog or walk around like zombies.

Imagine going through a collage and coming across a blurry photograph. Do you focus on it, or do you look for a photo that holds your attention? Preferably you would like a photo so enriching that the rest of the world fades away.

Persons living in the fog of ADD are always looking for that stimulating thing to calm them. Yes, it’s a paradox, a stimulant that calms your mind. But it’s what we all want a cup of coffee to do as we settle in for a big project. It’s a phenomenon that happens when watching a great film. “I’ve never seen a suspense movie like this,” you think. Your brain hits the snooze button on all other thoughts. 

Women and men with ADD are seekers of this stillness. Everybody is actually. Nobody wants to think about everything at all times. What stimulates and therefore focuses the mind of a person without ADD is not nearly stimulating enough for a person like myself. Persons with ADD work twice as hard, sometimes six times as hard, to find the sufficient means - stimulation - to achieve their end - stillness.

PART I

The Stigma and the Facts

The DSM-5 categorizes any person with an ADHD symptom as ADHD. Although a person may not have the H (hyperactivity), they are labeled ADHD. This creates confusion and an easy way to dismiss someone's diagnosis. “He doesn’t have ADHD. He’s the most still person I know.”

A University of Groningen (Netherlands) study delved into the underestimated side effect of those living with the disorder, stigmatization. This side effect can exacerbate a person’s moderate ADHD symptoms into a psychiatric disorder.

Most people want to be judged on their merits. However, some of these people will not return the favor to persons with ADD. This is a form of social-stigmatization. A 2007 study showed that 25% of American adult survey participants “did not want their child to make friends with a child with ADHD,” and 50% attached a stigma to help seeking behavior (medication or psychotherapy) in general.

This can lead to self-stigmatization, refusing to get treatment, eschewing open conversations about the issue and escaping reality through harmful recreations like drug abuse. Each of these aforementioned effects alone can bridge the gap for a person to travel from less acute symptoms to the mountaintops of high acuity ADD.

“In the past many adults and children went undiagnosed when ADD and ADHD were not commonly recognized,” says Lisa Lichenstein, a marriage and therapy psychotherapist. “Often those people felt inadequate or shamed since they were not given the right treatment or support to help them.”

For centuries, it has been easy to assess that there is something wrong with the brain of a person with schizophrenia. It has not been the same for persons with ADD. They are often viewed as simply weird, needing to get their act together or in need of better parenting.

Major Reasons for the Stigma Against ADD

1. How easy it is to be labeled ADD. Dr. Richard Saul who wrote the 2014 book, ADHD Does Not Exist, says the DSM’s qualifications are so loose that every American could be labeled ADHD.

2. Claims that it is an attitude problem that can be solved with willpower.

3. Claims that it results from bad parenting.                                                                       

4. The prescribed stimulants like Adderall which treat the disorder.

5. Persons with ADD tend to be disruptive, impulsive and random.

6. Claims that, in the case of an alcoholic, it is likely a symptom of alcoholism and not an actual disorder.

7. Claims that it is not a real disorder. 

Recent Studies on the Disorder

Published research continues to reinforce “that ADHD is a true biological and genetic disorder,” according to Stephanie Sarkis, Ph.D, a psychotherapist and author of several books on the topic. Sarkis cites that persons with ADHD have neurotransmitters that lack activity. Scientists do not know which of four specific brain regions are responsible for ADHD but the effects in these regions are visible nonetheless.

Persons with untreated ADHD are “at an increased risk for various substance use disorders.” A meta-analysis of six studies showed that persons with ADHD and receiving treatment for it were 50% less likely to abuse drugs and alcohol than the placebo groups.

“ADHD is certainly something our clients have,” says Tim Doyle, executive director of Solara Mental Health, a mental health psychiatric center in San Diego that focuses on treating persons via therapy over a medication based approach. 

Solara tests incoming clients to make sure their ADHD is valid. Self-diagnosis does not suffice. Solara requires a documentation trail including prior tests and family member opinions. If a client has had a past substance abuse issue then Solara may prescribe non-stimulant drugs.

“Every case is different,” says Lisa Lichtenstein. “In some situations positive reinforcement, or behavioral therapy, can be effective for kids (and sometimes adults).”

Other Conclusions on ADHD:   

1. People with ADHD process information in the prefrontal cortex of the brain differently than those without the disorder.

2. ADHD persons are deficient in norepinephrine (a stress hormone). The same way adrenaline activates the body to deal with stress, norepinephrine signals the brain “to wake up!”

3. Stimulant medications used to treat ADHD induce synthesization of norepinephrine within the brain.

Stimulants like Adderall are generally the most effective solution for treating ADD. However, Adderall brings to the surface centuries of both public and political turmoil over drugs and a number of potential biological side effects.

Major Reasons for the Stigma Against Adderall 

1. The name. The drug contains amphetamine salts which bear a resemblance in name and effect to methamphetamines.

2. Misuse among college students. A 2015 cross-meta analysis estimated that misuse among college students was 17%.

3. Addiction is a serious risk.

4. Some side effects may include anxiety and sleeplessness.

5. It is used to lose weight.

6. Some teachers are adamant that their student-parents treat their child’s disruptive classroom behavior with drugs like adderall.

Alternatives to Treating ADD

A 2018 study conducted on a small group of participants showed that Transcranial Magnetic Scanning (TMS) effectively alleviated the symptoms of ADHD and improved other functions like emotional decision making and working memory. During a TMS session, a magnetic coil is placed against a patient’s head. Repetitive magnetic waves emit from the device in order to activate nerve cells in the brain and/or direct them toward normal activity patterns.

Now here’s the catch: 

“The FDA has not approved ADHD for TMS yet,” says Susan Del Valle, executive director at the Brain Center TMS. TMS was approved for Major depressive disorder (MDD) in 2008 and Obsessive-compulsive disorder (OCD) in 2018. Bipolar 1 and 2 are the next disorders going through the necessary trials to get FDA approval. Without that approval, a six week TMS session for treating ADHD can cost $9,000 instead of $300 that persons with MDD or OCD might pay.

Until a pharmaceutical or device company invests millions of dollars in trial testing, insurance will not cover TMS treatment for ADHD.

PART II

My Experience with ADD

From 2018-2019, the states of New York, Virginia and Florida made mental health classes mandatory in public schools. Perhaps these states made a step in the right direction given that the American Psychiatric Society reported that 50% of mental illnesses begin in persons by the age of 14.    

I thought my ADD symptoms were normal the same way I thought having blurry vision was normal before discovering glasses. If I had been attending these mental health classes, I would have discovered my ADD symptoms were not normal. Perhaps I would have found out by third grade instead of three years after college. 

At an early age, I experienced anxiety when facing decisions, especially when expected to lead. Every time I led a hike through the woods doubtful thoughts followed. “Am I going too fast? Should we stop here? What is life? Should I ask this person about this thing that I have no interest in? Are we having fun? I should have stayed home? I should have stayed home.”

I did not take the time to question whether all these doubts were normal. For over a decade, I searched for and experimented with different methods to treat my ADD symptoms.

ADD Self-treatment Methods

(1 being ineffective and 10 being effective)

1. Conversing with eyes closed (7)

2. Cardiovascular exercise (5)

3. Writing (5)

4. Getting sober from alcohol and marijuana (4)

5. Listening to white noise while working (4)

6. Earplugs (4)

7. Meditation (4)

8. Working with a dating coach (3)

9. Eating protein in the morning and fruit at night (2)

10. Essential oils (specifically vetiver and cedarwood) (2)

11. Brain games (1)

12. Eating foods with choline (broccoli and cauliflower) (Unknown)

If I was forced to choose between sight and hearing I would choose seeing. That’s how I used to think about it anyway. Then I had a conversation with my eyes shut.

When my eyes are open I’m distracted by trillions of colorful stimuli. When I close my eyes, it all goes away. I feel like Neo in The Matrix (1999). Instead of dodging bullets I dodge random-thought projectiles. I am able to quickly comprehend and respond during conversation.

Conversing with closed eyes was the most relieving treatment I found. The downside is a substantial one, however. You would be gambling to try this on a first date and a fool to do it while walking. It is impractical to use in many situations.

PROGRESSION OF MY ADD SYMPTOMS

Age 7

Locking myself out of the house.

Age 8 

Red ink across homework: “Did not follow assignment instructions.”

Make careless mistakes on assignments.

Age 11-13

Consistently called “weird,” “random,” “too much,” “moody” or “quiet.”

Forget assignments are due.

Age 18

Don’t listen to people after I finish talking. 

Age 20

Forget to set my alarm.            

Set alarm for p.m. instead of a.m.

Become conscious of my unstable personal relationships.

Ambivalence in the form of: 

      1.     Respect for people who can relax for hours
      2.     Confusion about why my friends do not want to be consistently active.

Age 21

Confusion from others after they read the first overstuffed page of my screenplay.

Look back on a conversation I had years prior and wonder when a conversation of such flow will happen again.

Anger and confusion regarding why I think the way I think.

Still locking self out of house and now my car.

Age 23

Conversations entrenched in metaphysics and dissatisfaction with my conversations moving fast from subject to subject.

Age 25

I tell friends I have ADD and label it “Attention Delving Dimensions.”

Age 27

Dance partners tell me frequently, “I have no idea where you’re leading me.”

Still locking myself out of the house.

My First Experiences with Adderall

In 2013 I tried Adderall.

Confidence, a clear path forward and an epiphany. These were some of the side effects. After several weeks, I starved myself of distractions to such an extent that I felt purified of them. ADHD persons who take stimulants to treat their disorder report having the autonomy to continue on a straight trajectory.

Jonathan Pugh writes on the ethics of cognitive enhancement and asserts that personal autonomy comes from repressing morbid impulses. And what causes the repression of impulses derives from the ability to engage in critical reflection on these impulses. Both the untreated and treated ADD person have “the capacity to reflect on their desires”; however, the former is “unable to exercise the relevant capacity” due to overwhelming stresses. They feel pressure to act first and dwell on alternatives later.

In 2003, I was 11 years old when an eye doctor put a phoropter (sight-testing device) to my face  “Woah!” I repeated. “This is how everyone else sees?!” My family member was standing to the side and smiling tearily. They may have been thinking, “Maybe he’ll be an “A” student now.” While the mathematics on the whiteboard became clear, my ability to focus on it did not improve. In fact, my attention worsened. Everything to the eye was no longer fuzzy but crystal clear; therefore, more distracting.

In January 2020, I went in for a psychiatric evaluation and after 30 minutes came out ADD certified. I was nervous though, because there was a white elephant in the room - the risk of addiction. I am a recovering alcohol and marijuana addict; therefore, there was a significant risk that I might abuse adderall.

The first two months of taking adderall were accompanied by feelings of euphoria. As someone who lacks the ability to be consistently stilled, euphoria was my alcohol-fueled and dogmatic pursuit for nine years. Euphoria holds my attention.

The euphoric feeling wore off by the beginning of the third month. And when the euphoria was gone I found myself not with an appetite to chase after it but to continue forward.

This was a moment of clarity. What I value more than euphoria is an organized mind that gives me the momentum to move forward briskly. This newly stimulated mind infuses my work ethic with stillness. I don’t feel euphoric when still, but the stillness gives space for developed ideas instead of a smattering of ideas. This gives my life meaning.

Living Life While Treating My Disorder Effectively

If I’m reading a book and a door slams, I continue reading the book! Today a door slam is a door slam; not a trigger for jetting off to Neverland.

Finally, I have been stepping up to the plate in terms of owning my voice and sticking up for myself and others. I am often looked to for family mediation on sensitive topics like finances. I was focused enough to formulate a plan to open a family member’s ears to their lifetime of untreated anger outbursts, and they opened their heart to it. 

I began writing my screenplays with love. Writing was always my solace. During an out of control thought-tornado, the written word is my storm cellar. After the tornado passes, everything I brought into the cellar is still there. It is in this cellar that I can build one thought on top of another and try to make sense of the world.

Screenwriting had become a job after nine years though. And of course it did!  After all, there are infinite directions a fictional story can go, not the best handrail for a person with ADD.

Something changed when I began treating my ADD effectively. I saw how keeping an audience engaged on one interesting character did not require that character to make grand speeches, travel the world and accomplish Alexander the Great sized goals. Showing the character’s normal day to day activities is much more engaging than all of the former. My under-stimulated brain used to reject this idea. Now my brain can see the beauty in this simplicity. I do not need much to create something powerful.

Order to Appear

On March 2020, I went in for a long overdue surgery. While taking my blood pressure, the nurse told me how sorry she was that she had inadvertently revealed my adderall prescription to my family member. The floodgates had to open sooner or later though.

When I awoke from surgery I remember thinking that this day symbolized the beginning of a healthy lifestyle. The family member sitting across from me was probably wondering, “Is this the end of one hell and the beginning of another?” There were no tears of happiness in their eyes like when I first donned a pair of glasses.

“I would get off that stuff as soon as possible,” said my mentor. “You don’t want to be on a pill for the rest of your life. What’s your game plan for getting off?” When I told him the effects of my ADD, he responded, “That’s what meditating is for.”

While recovering from surgery, a family member found my adderall prescription in the mail. She withheld it and then claimed to have thrown it out. The family member called their mentor. The mentor confessed that they too had ADD and were also on Adderall.

I tried to give my family member peace of mind by sharing my experiences with ADD and Adderall. They calmed down momentarily. Unfortunately I would not read the literature on how to deal with the stigma of ADD for another four long months.

Cooler Heads Shall Prevail

The family members told me that I did not need Adderall. They didn’t ask questions about the benefits I got from it. They never once asked me about my disorder.

Their goal was not to understand my point of view but to prove that they were right. They assumed I was naturally the one needing to defend my views, and I gave them the courtesy of explaining things to them. Some family members listened. When I raised an uncomfortable point some family members relied on saying, “I don’t want to fight.”

Well, who can argue with that?

After every conversation I thanked my family members for talking to me about their opinions, and I reinforced how aware I was of the potential side effects of my treatment. At month five, I broke my winning streak of remaining professional when one of my debaters questioned whether I believed in my heart that I had a disorder.

Reactions to my ADD Treatment

1. “Don’t you see it as a crutch?”

2. “Do you think your boss wants to hire someone on Adderall?”

3. “I respect you less when you’re on it.”

4. “I know you have more common sense than that.”

5. “I know you’re smarter than that.”

6. “It’s a drug.”

7. “We have noticed a change in you.”

8. “We do not like the change in you.”

9. “You don’t think I want to do it too? I would love to do it. But I don’t, and I don’t think you should either.”

10. “You say you care about your health but you do Adderall.”

11. “Drug addict.”

Part III

Talking About ADHD and Treatment

As Dale Carnegie notes in his book How to Win Friends and Influence People (1936) “Anyone who takes the time to disagree with you is interested in the same things you are. Think of them as people who really want to help you.”

Andrew Soloman writes in his book Far From the Tree (2012) that when a person stops denying the reality of another person’s experience, humanity and understanding can be achieved. This axiom should be used by persons on both sides of any aisle, for persons with ADD must not deny the reality of another person’s opinion on the subject.

When I started sharing about my ADD, I would have benefitted from:

1. Being the person to initiate the conversation.

2. Centering the discussion on the disorder first instead of the treatment. If a skeptic does not believe a condition to be real, good luck having a serious conversation about your methods of treating it.

“I have ADHD, and it’s just as real as other medical conditions.” Simple, direct and powerful. This intro statement is the foundation on which so many conversations can be built upon.

When someone tells you “your treatment has long term negative effects on the brain,” you can respond “thank you for the information. Can you please send me the study that backs your claim?” If they say that they don’t wish to fight with you, agree with them instantaneously. If I could do it over, I would have given my family members the news before the nurse did. People are more tolerant of the one who initiates the conversation over the person who is exposed. So don’t keep the truth inside. Those who do keep the truth inside will experience their symptoms become psychological disorders.

Remember these two questions when feeling indecisive about opening up:

1) What is more important, someone’s opinion of you or the foundation of your mental health?

2) Is your mental health built upon other person’s opinions or does your own truth form the bedrock?

Conclusion

After six months, my family members still have the same views of my ADD: It can be overcome via willpower. One family member in particular continues to make clear how unworthy of their respect I am when taking Adderall because it is simply a drug. It’s all good though. I have good relationships with them regardless. I’ve found that talking about this meaningful subject with them actually focuses me.

I am writing this essay’s ending while off of adderall, and it has been very difficult to complete. My natural tendency is to avoid making summarized conclusions. I turn in a draft thinking, “Finally done” and my editor responds, “Officially confused.” Summing up information that has already been written on is not something my ADD brain thinks is stimulating. Throughout high school, I asked my English teachers, “Can I write an essay without a conclusion and still get an A?”

The reason I’m talking about this seemingly off topic matter is to reinforce that this is what my life is like when I’m not treating my ADD. You might think I’m a drug-addict, or that I just need to go to a Tony Robbins seminar and get in touch with my willpower, because that’s what you did. I’m living proof that willpower (while rewarding to experiment with) is not enough. Put the image of your colorful brain scan next to a copy of my duller one and see the results for yourself. 

My ethics professor, Casey Hall, proclaimed one day in class that we are happiest when using our brains. That truth rings more true as the years go on: my life is meaningful when I make the best use of the brain that I have been endowed with. A great way to do that starts with talking about my disorder. Theoretical physicist Michio Kaku calls the brain “the most complicated object in our universe.” Given this claim, it therefore makes sense how very rewarding it is to untangle my complicated brain by treating my ADD.

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