Last Friday we talked about ADD and ADHD with leaders in the community who had a ton to say about awareness, stigma, treatment, and what it’s like to find yourself in such a misunderstood (and often-shamed) condition that affects each person differently. –Amanda
Roundtable Recap: ADHD
Image source: http://www.health.com/health/gallery/0,,20441463,00.html
Here at WEGO Health decided to learn a little more about a disorder that affects many but few know all the facts about. We love to enlighten the community and bring awareness and information to people who may be able to utilize this information to help themselves or others in their community. In Friday’s roundtable we focused on ADHD. We found several amazing men and women who are also trying to educate others about ADHD, John (@johnseverino), Dr. Stern (@ADHDFamily), Bonnie (@ThrivewithADD), and Jeff (@AttnTalkRadio). These four remarkable people shared their stories and plenty of helpful tips about recognizing the disorder, advocating for yourself and others, and facts about ADHD.
John – http://catholicadhdcoach.com/
Dr. Stern– http://www.adhdfamilyonline.com/
Bonnie – http://www.thrivewithadd.com/
Being an ADHD Health Activist is no easy task. So how did you get involved in advocating?
Dr. Stern: Well I got involved because I became a little disenfranchised with the medical community and their lack of support for the children. Another part of my activism comes from being a misunderstood kid. I grew up in a time where ADHD wasn’t really talked about the only people diagnosed were children with behavioral problems and that wasn’t me so I sort of fell through the cracks… We have to stop with these labels and find out what these adults and children really need to survive.
Bonnie: Well, I got involved by being diagnosed with it rather accidentally. I had a friend who was in trouble and ADHD and I said I would help them. I then went to a conference to find out how to help my friend and to my intense surprise I read myself in the handout. So I signed up with an 11 month training program and that’s how my whole career turned around and I became and ADD Coach.
Jeff: I got into coaching kind of upside down. I was in the corporate work and the insurance world. Then I decided to be Mr. Mom for about 9 months when my wife came home and said you should try this coaching thing. A friend of mine said I should try coaching adults because of my dyslexia and learning disability and how I struggled with that. So I started this podcast to get my foot into social media and it really turned out to be a large thing because so many people aren’t aware of ADHD coaching. So this show is about getting the word out about ADHD, educating the public, and bring awareness and support to ADHD.
What are some of the challenges asscociated with advocating for ADHD?
Dr. Stern: The most challenging aspect in a parenting world is the feeling that parents go through when they think “I’m alone in this,” because unfortunately there is so much shame associated with ADHD. That then umbrellas to “am I a bad parent?”, “what did I do wrong?”, “‘normal’ kids don’t go through this.” There is an idea that a kid with ADHD is broken and we can just “fix” them which is absurd.
Bonnie: Often the shame leading to avoidance is leading to a bigger problem than the ADHD itself. The thought “I don’t dare to ask for direction because then people will know I didn’t do it right the first time” is so damaging.
Jeff: One of the most challenging aspects is trying to get people to relax and notice who they are. Having ADHD is like being born left handed in a right handed world. Everyone is trying to give you a right handed solution. Once you start realizing that you’re reaching for the door with the left hand and that’s okay, it gets them to relax and realize that this isn’t so bad.
The online community is a great way to connect with others that share your interest in Health Activism as well as remind you that you are not alone on your journey.
How has social media and the online community changed your personal health journey?
John: Well I started a Facebook page to go with my website and I didn’t think I would get that many hits. Now I have over 1500 fans and it’s been great because we’ve been able to have open conversations that I don’t think people would normally have an opportunity to look at.
Dr. Stern: With social media information now comes into your house. So even if you live out in nowhere, if have internet you can access quality care and connect with people in all different ways. Facebook has been life altering for me and my work. We’ve removed the “I’m alone” feeling. You have this social proof of people going through the same thing.
Bonnie: Well the online platform, and in my case it is primarily a blog, it definitely helps you communicate in the moment. If there is, say, a client of mine that reached an epiphany, I can put it anonymously on my blog and there is a way for other people to comment on it. However, I think many people are concerned over the possible stigma because it’s been out in the news a lot about potential employers going to Facebook and looking you up. So as long as it’s out there people can access it and they are going to be concerned about the stigma or personal prejudice of ADHD.
Jeff: With social media, people are usually very quick to give top 10 obvious solutions to something and that isn’t always the case for everyone. To me there should be more conversations about how you’re different and how your condition is unique. People always look for the quick solution and when they don’t find that they get frustrated. People come to me and I help them realize that they are different and not every solution will work for every person.
With a condition that is so common, but so different for each person, there are lots of options out there for treatment or management. What do you advocate for? Do you discuss different types of treatment and management for ADHD?
John: It’s very interesting how you have two groups: the holistic approach and the not holistic approach. I think things that have been tested and can see statistics on are helpful. However, I don’t necessarily discourage the holistic approach. It becomes almost a bipolar relationship—you have the holistic and not holistic way that causes some fireworks.
Dr. Stern: For me there’s the issue of medication and not medication. As for working with children there is nothing more controversial. About 90% of parents say they do not want to give their kid medication. However, so many people are looking for a quick fix. Medication can do that but it can also cover up the symptoms. There is no concrete treatment that helps so there is a divided medical community.
Bonnie: I think people are looking for what brand works. So they’ll drive the discussions online to “what are you using?” They are having trouble figuring out that everyone is different and each brand will be different.
Jeff: It’s interesting because almost every show is related to this. I’ve found there are five key categories 1. Get the right diagnosis. 2. Education. 3. Things that affect the physical brain—medication, fish oils, diets, proteins, etc. 4. Coaching and behavior therapy (which is really difficult because when you get inside of everyone’s head we don’t know what each other are paying attention to), and 5. Neuroplasticity. To me most of the discussions fall into these buckets.
Raising awareness is one of the most important parts of advocating. What would you want Health Activists in other health communities to know about ADHD?
John: I just think that education becomes so important because there are so many facets to how ADHD permeates our lives. The medications help but they aren’t magic—you still have to relearn behavior. So, I think education is key and to get them away from that quick fix.
Dr. Stern: I would encourage people to lead with compassion. In my experience with adults and children, people with ADHD tend to face so much criticism, so much doubt, so much negativity. They’re looking for compassion and validation and we need to support them. We need to let them know that things are going to be okay and then ultimately put them on the path that shows them how to be okay. People are just looking for support.
Jeff: The one thing about ADHD is that you can have an impact you can change people lives. It is the most fun and the most thrilling thing to work with someone with ADHD. You can have such a positive impact on their lives.