Even now, 14 years after Adult ADHD was declared a medical diagnosis, ignorance remains. That means millions suffer in isolation. With this next question from the ADHD Partner survey, respondents detail the cost of that ignorance.
Question: What do you wish you’d known earlier about ADHD?
• I wish we’d known before marriage. That way, we could have put strategies into place. Instead, he couldn’t cope with being a husband and then a father while holding down a job, and I didn’t understand. The public needs to know that ADHD has a major impact on relationships and that their “problems” are not unique to them: they are, in fact, symptoms.
• I wish I’d known exactly what my wife meant when she said, prior to our marriage, “I’m going to drive you crazy. I want you to know that up front.”
• I wish more people understood the positive aspects to ADHD. With treatment, my husband has become more able to negotiate the “everyday world,” where things get done and people pay attention. This has supported, not diminished, the unusual, creative side of his brain that I was so attracted to in the first place.
• I wish I knew how full of nonsense these anti-medication blowhards are. I used to think they had a point. Now, I suspect most have considerable mental problems of their own. I want people who have ADHD to understand how much better things will be for them and their loved ones if they only seek help and honestly deal with their challenges. With my eyes now opened to how common these “minor” disorders are now, I can’t tell you how much undiagnosed and untreated mental illness I observe! Disorders that cause the person – and the world – trouble. Some people will admit that they think they have a problem, but are scared to seek help because of the anti-medication hysteria. I see these people throwing away so much potential because of their unfounded fears.
• This condition has so affected everything, but I didn’t know it. I always suspected something else was wrong, but because he is able to keep his cool around everyone outside the home, I was the one who looked unstable. I wasn’t. I was overwhelmed.
• I wish I’d known not to trust my husband’s mom, the psychologist. Her golden boy had no problems; he was gifted! Now, I really struggle with anger about how long this went undiagnosed. Her blind narcissism didn’t help any of us, least of all her son or her grandchildren.
• If we had known about ADHD many years ago, we wouldn’t be in the damaged emotional place we are in now. How could I ever have “coped” with some of the more challenging aspects of his untreated ADHD? How could he cope, either? Hard as he tried, he continually failed. He had to watch me begin to distrust him and see the pain that he caused to the family he loved, but he was powerless to stop the behaviors.
• The high cost of ignorance. Over the years, if other adults are like my husband, untreated ADHD causes people to make excuses for their behaviors and blame others for them. It erodes their self-confidence and generally destroys relationships they value most. My husband believed for years–and still does to some extent–that I was the cause of all of his unhappiness. Of course, there was the self-medication: loads of diet Coke, alcohol, E-bay and prescription pain meds. For years I put up with the “random” behaviors, but what finally threw me over the edge were his mood swings and verbal abuse. If I had only known that there was a medical problem, I wouldn’t have taken it all so personally – and he wouldn’t have felt like such a jerk.
• Our children are grown. Knowing about my husband’s ADHD when they were young would have prevented many upsets over his impulsive spending, irritability, and poor judgment of time. It’s hard for children to not associate these behaviors with lack of love, which sets up so many difficult dynamics for them later in life. If we’d known, we all could have supported him in getting some help and my children would have learned different lessons about love and family.
• I wish people understood how many divorces occur because of this “secret” condition. We almost ended our relationship many times before my partner was diagnosed. Now we try to have a sense of humor about it, and there is a lot more understanding.
• I wish I’d known all this twenty years ago. In the worst part of it, I looked forward to being dead and wouldn’t relive those years again even if they were the only years offered me.
• I deeply lament we went 30 years before finding out too late what had made our lives so miserable and unhappy. What a horrible waste. We developed such horrible habits in how we treat each other. And, the affect on my children. Gasp.
• I’m glad that there is finally a name for the behaviors, I’m glad that there are support groups to share what has worked. With more awareness comes greater acceptance. If people would seek help instead of hiding behind defense systems, unrecognized ADHD would not be destroying so many relationships.
• A whole lot of pain stems from the fact that I believed that his brain worked essentially like mine. That means, I kept viewing his actions through my frame of reference. Wrong-oh!
• I wish my wife’s parents had known. She and her siblings bear huge emotional childhood scars due to their father’s severe untreated ADHD, which led to alcoholism as well as spousal and child abuse. A sad “legacy” probably going back generations.
• I wish I knew it meant more than these folks couldn’t sit in their chair. Little did I know that was the least of his problems!
• To think I’m a teacher; I’m appalled at how little I knew! People are going through so much unnecessary pain. Facing retirement now scares me — I won’t have my office and coworkers to escape to, and he will be around 24-7 disrupting the order. Knowledge gives me hope, though. I see ADHD in so many of my friends’ husbands. We need a serious, national information push.
How about you? What price did you pay for society’s widespread ignorance about ADHD? Please share them in a comment to help educate the public. It’s easy, and you don’t have to register. Just write it in the box below.
TagsADD and relationships, Adult ADD, adult ADHD, cost of ignorance., I wish I knew earlier, strategie
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August 23, 2008 at 10:59 am
Katharine
Before my oldest son’s AD/HD was diagnosed and treated, my husband and I thought that we must be really bad parents … despite the fact that I’d raised a wonderful daughter in my first marriage. At times, we didn’t like our son, as sad as that is. And before my husband’s AD/HD was diagnosed and treated, we had so many fights and I felt so ignored. In the grasp of the emotional pain caused by his behaviors, I forgot the sweet, sweet person underneath, and he came to think that all I ever did was complain. We can’t get those years back and we’re happily coping now, but how cruel it is that it isn’t common knowledge how hard AD/HD can be on adult relationships. So much hurt could be prevented. My husband and I know a young couple who just divorced shortly after marriage because, we think, he has undiagnosed AD/HD and would often forget to pay her the attention she needed. So sad!
April 27, 2009 at 7:31 am
Lucille
I was not diagnosed until I wa 30 years old. My family doctor put me on prozac and all of a sudden I was able to concentrate and focus when driving and did’t zone out. I could remember which way to drive to go somewhere. I stopped crying over everything and thinking about my bad childhood. If I was diagnosed in elementry school I could have gone on to college and been more successful. Reading and comprehendsion was always difficult for me. Keeping track of time, sitting still, interupting people that were talking to me, remembering things and words, all could have been different!! I have been on Strattera and prozac for years and now I notice it is not working as well. Forgetting, not being able to focus, waking up at 2 AM and not being able to fall back to sleep for hours. No sex drive. I was on Concerta for a little while but yawning was an issue.
Can you talk about sleep issues and sex drive at your teleconference?
April 27, 2009 at 10:49 am
Gina Pera
Hi Lucille,
I will try to cover a bit of that, but mainly I’m covering some of the basics — of recognizing adult ADHD, understanding how it affects relationships (both partners), and learning about strategies for change.
You are right that sleep issues and sex drive are HUGE, IMPORTANT topics, and too few clinicians treating ADHD grasp this.
I am not a physician, but I am the nerd in the front row carefully taking notes and listening during many lectures by experts in treating ADHD. And I’ve listened to the stories of many adults with ADHD (and their partners), helping them to play detective in pinpointing treatment targets.
One thing I’ve noticed: There is frequently a “sleep debt” among people with ADHD. And until that is “paid,” progress might be minimal or non-existent.
And one thing people often don’t understand about the stimulants: They can help some people with ADHD get better sleep!
So, when I hear that the stimulants have made someone sleepy, the first thing I’d ask is, “How has your sleep been for the last few years, or your entire life?” And if it’s been intermittent or otherwise not-so-good, I’d wonder if the stimulants could help you normalize your sleep. Sometimes you need to just go with it for a while — sleep as much as you can until you pay your sleep debt.
Sometimes it won’t be the stimulants that help with this but another medication.
Bottom line: If you have ADHD and you’ve never taken a stimulant consistently, you’re not giving the first-line medication for ADHD a fair trial.
Also, if that combo (Strattera and Prozac) was working for you and now it doesn’t, it could be that changing hormones are the culprit. Or perhaps those medications have suppressed other important neurotransmitter activity in your brain.
I hope you can talk with your doctor about this. Sometimes you have to push to let them know it’s a real problem, and you need a better solution. And sometimes they need a list of the symptoms you are experiencing.
I hope that helps.
Gina
April 27, 2009 at 12:09 pm
Lucille
Thank you for your input on my issues. I will look into Stimulants for sleep. I am 44yrs old and had sleep issues for about 10 yrs. I’ll ask my doctor about the suppression of neurotransmitters too. Also looking into Herbs for sleep.
Thanks,
Lucille
April 27, 2009 at 5:44 pm
Sarah aka Hawah
You might give Melatonin a try, Lucille. My boyfriend has ADHD and it helps him with some of his sleep difficulties. My understanding is that it doesn’t carry a risk of drug interaction the way herbs do, so it’s a little safer to try when you’re already taking other medications.
My boyfriend is also one of the “odd” folks with ADHD who sleeps better when on his stimulant medications. He usually takes one of the old-fashioned, fast-release Ritalin pills just before bed. I wish we could convince his doctor to prescribe 24/7 sustained-release Ritalin, because my boyfriend usually wakes up at around the time the medication wears off and I suspect Ritalin rebound is to blame, but I don’t expect the doctor will be willing to give it a try anytime in the near future.
Make sure you keep in mind that not all stimulant meds are the same, so if one doesn’t work for you it’s worth it to try another one…even if it’s the same active ingredient. My boyfriend is unable to take Concerta (it causes severe stomach upset), but he has no difficulty with sustained-release Ritalin. Same active ingredient, but different inactive ingredients.
As for what I wish I’d known earlier about Adult ADHD – I wish I’d known that it would be necessary to nag, whine, cry, threaten, rage, or in some other way play the drama queen whenever it was truly important for an ADHD-related behavior to change. Nothing less breaks through the ADHD-induced fog.
September 6, 2009 at 9:38 pm
Bren
I spent my whole life wondering what was wrong with me. I knew I was different. My mind was always wondering here, wandering there.
I always felt lost and my head didn’t think clearly. I wondered if everyone thought the way I did because they didn’t act like their head was confusing to them. They seemed to be able to understand things more easliy, learn faster and grasp concepts 10 times easier than I could.
I started abusing alcohol and drugs very young. They seemed to ease my pain of being different. I actually felt like I fit in when I was using or drinking.
I would say I participated in many high risk behaviors from a young age. From poor judgement of sneaking out of the house and going to bad parts of town a lone or with friends to being sexually active at 13 to cutting school because I was bored and I couldn’t get good grades even when I went to school and put out great effort-so what was the point in trying at something I simply couldn’t really succeed at? I craved excitment, stimulation. Unfortunatley it usually ended up to be something wrong or bad-something I shouldn’t be doing. Those were the most exciting things to me.
I was pregnant at 15. I hyperfocused on turning life around and was able to do so as best I could. I finished high school, enrolled at a Jr. College and got a job all in a few months time. The baby was born and once again, even more than ever, I felt different from everyone else.
I married a few months before I was 18. It was an impulsive desicion and I was pregnant already-I didn’t feel I had much to lose. My new husband seemed to have a “bad boy” image and gave me the sense of danger and excitement by just being with him.
We spent years and years fighting over my not listening to him or making bad judgements and careless errors. Our fights were so horrible-I knew I was either crazy or he was a monster. It wasn’t until years later I learned neither was true.
To comfort the pain of not knowing if there was something wrong with me or if he was a terrible man for constantly being critical of me I used alcohol in an abusive manner. My hyperactivity allowed me to be a high functioning alcoholic that was a stay at home mom. I did most of my drinking a lone and it was hidden.
After 18 years of marriage I made some really risky business desicions and horrible stress lead my alcoholism at it’s worst. I was given an ultamtum by my spouse to quit drinking or leave the home.
I commited to AA and began working the 12 steps with my sponsor. That emotional work left me to the desire to delve deeper into why I was the way I was and really uncover my deepest being that never felt okay.
I learned I had ADD. I am still in the beginning stages of treatment and I can’t believe how much pain this caused my husband and children.
I found out that people with ADD are more likely to be sexually active early, to be addicted to drugs and alcohol, to be pregnant by 15, to engage in dangerous activities,…so many things I emotionally beat myself up for year after year!!! What a relief to know I am okay in my self and I really had no control over this disorder-or atleast the disorder made it really appealing to engege in these behaviors to stimulate my brain. Now I can educate myself to minimize these effects and help my family understand they are not crazy-I am just different from them.
I try to focus on being grateful of the knowledge—and the benefits of the disorder.
If you think you have ADD or someone you know, please get checked! Diagnosis and treatment can save years and years of pain!
September 6, 2009 at 11:01 pm
Gina Pera
Thank you, Bren, for sharing your story.
I’m so sorry to learn that our societal ignorance about ADHD had such an adverse impact on your and your family’s life. There are many stories like yours, unfortunately. Let’s hope they are decreasing in number as we create more awareness.
The lack of knowing one has ADHD can be as tough as having some of the symptoms. And, I agree, once you come out of the fog of confusion, you can start focusing on your positive qualities.
thank you so much,
Gina
March 7, 2010 at 3:54 pm
Suzana
I can recognize the last 19 years of my life. Having lived with an ADHD spouse and experienced some ‘ups’, yet many ‘downs’, unrecognised real reasons for many moments, unexplainable and unimaginable to most people that I knew, I struggled to find the answers to my questions.
‘Why?’ Why would a person who displays a good nature to the outside world turn to a monster on occasions? Many occasions.
Friends would say, ‘He is tired, love him. ‘
I did. I did so much that I forgot to love myself. Or even notice myself, or my needs. It is like cancer. Takes over your life. Nothing to stop it.
I woke up. I figured it out. I try to fight it. Like cancer.
I hope I survive.
March 8, 2010 at 2:26 pm
Gina Pera
I’m so sorry to hear this, Suzana. I wish I could say this is the first time I’ve heard of such an experience. Sadly, it is not.
ADHD is potentially a condition that robs everyone involved. Knowledge is power. And the younger the better. Early awareness can prevent so much of the “emotional baggage” that often accompanies late-diagnosis ADHD and that destroys so much hope, optimism, and good will between partners, among familiy members and friends, and within the adults themselves who have ADHD.
Waking up to reality is the first step towards reclaiming your life and happiness. I hope you will also pursue solid and informed support. It sounds like your friends could use an education.
Gina