18: The one about diagnosis

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Description:

What we can do to increase the chances of getting an accurate diagnosis?
 
Welcome to the ADHD Friendly Lifestyle Podcast, for those of us with ADHD, who have had enough of trying harder and want to live a more comfortable, healthy, and happy life with less frustration and overwhelm. It’s time to get rid of guilt and shame–around having ADHD, our needs, and challenges through stories, knowledge, and humor to speak up about the experience of women, moms, and being late diagnosed with ADHD. 
 
We can build acceptance and growing our self-compassion over time, to help us take care of ourselves, ask for help when we need it, and be comfortable with who we are. Join me, Moira Maybin, as I share knowledge about ADHD to make your life easier, and what choices you have to make your tomorrow a more ADHD Friendly day.
 
Thank you for being part of the ADHD Friendly Lifestyle, hosted by Moira Maybin. Subscribe to the show on iTunes and leave a rating and review. Join the conversation today!
 
Have a question suggestion or want to reach out? Email Ask@adhdfriendlylifestyle.com

Show Notes:

Topics discussed in this episode:
When ADHD comes up in our lives 01:57
  • getting a diagnosis can feel a momentous shift in our own self-perception and identity
  • sometimes it feels that way to others, but not always
  • when we look to health professionals for support, direction, and answers they may not be available or have the knowledge we need
  • Moira shares research on the negative outcomes to physical and mental health in this situation that is rather dire
  • This episode is somewhat of a rallying cry for women with ADHD to get the medical attention and support we need and deserve
We don’t “just want meds” 03:28
  • When we have:
    • Managed/hung on despite all the challenges
    • Are late diagnosed
    • experience a tipping point
  • Best practice for medication trials include:
    • a trial
    • measure side effects and benefits using objective checklists that are readily available online
    • increasing medication dosages until side effects outweigh benefits
    • discuss with us the multitude of stimulant options
    • consider non stimulant medications to treat emotional regulation, sleep, and frustration tolerance
increase the chances of getting the right diagnosis 05:12
  • most women with ADHD were mistreated or misdiagnosed with anxiety or depression prior to having ADHD considered
  • women with ADHD experience greater challenges and misunderstanding of their symptoms that prevents or makes it more difficult to receive a diagnosis
  • Two most important factors are:
    • Go prepared to ask for underlying ADHD to be considered as a possibility
    • Know your symptoms that have a prevalence in women with ADHD: You DO NOT need to struggle in all these areas.
      • a reluctance to read (not for me!)
      • episodes of rage or tears
      • frequent irritability
      • picking behaviors
      • intense premenstrual symptoms,
      • exhaustion,
      • eating dysregulation,
      • chronic anxiety,
      • chronic relationship problems,
      • perfectionistic behavior, (feeling like things are never good enough)
      • substance dependence,
      • sensory hypersensitivities
      • chronic restlessness,
      • internalizing symptoms (discussed in episode 17)
      • low self-esteem,
      • late onset and symptoms for women, particularly around hormonal shifts in life,
      • inattentive symptoms,
      • having emotional dysregulation is a key feature of ADHD, but it was taken out of the diagnostic criteria in North America. But it is still a defining feature in ADHD.
    • take responsibility of your own health care and be aware of the issues in patient evaluation
For our cherished and needed clinicians 15:10
  • to improve diagnostic accuracy will require exploring evidence-based issues in patient evaluation including:
    • the proven gender bias in how ADHD is diagnosed, treated, supported, and understood
    • shifting from a behavioral model of how ADHD presents to an impairment model
      • more emphasis on how the impairments affect us rather than how we’re overtly behaving
      • due to the changing state of hormones in anyone who has fluctuating levels of estrogen we will present for evaluation very differently with lower estrogen (ie menstruation/menopause/post-delivery) compared to another phase with higher estrogen.
      • Women can have a later appearance of symptoms when they can no longer hide or manage them as expectations increase with age.
      • there may be minimal childhood symptoms.
      • our impairments worsen over time
    • to tease apart a complex presentation, especially a subtle, less impaired presentation
      • consider internalized qualitative impairments,
      • distinguish between primary and secondary anxiety or depression
      • are there any comorbidity secondary to ADHD, or history of impulsive sexual behavior
    • it is extremely important to consider how motivated women with ADHD are at masking our symptoms
    • this may mean subjective, plus objective measures, including trauma informed interviews can be helpful.
    • long term monitoring is needed to tease this all apart
Recap 17:47
  • Despite growing understanding about ADHD in general getting an accurate diagnosis remains a challenge for many,
  • it can include unique challenges
  • often women are being diagnosed with or treated for anxiety or depression without a formal evaluation, or even considering ADHD
  • If you don’t have a medical professional who’s willing to see you, hear you and work with you, it’s time to move on
  • to increase the chances of getting the right diagnosis, both women and clinicians need to up our knowledge about ADHD and women.

Resources:

  • Binder, S. (2021, April 20) Females, Hormones & ADHD [Webinar presentation]. CADDAC 2021, Virtual Event
  • Didier, C., Duryea, K., Hughes, R., Indergaard, J. (2019, Nov. 9). The underdiagnosis of ADHD in Girl’s and Women [Conference presentation]. CHADD 2019, Philadelphia, PA.
  • Dodson, W. (2020, Nov.5 ) The Forgotten ADHD Medications: The Alpha2a Adrenergic Agonists [Conference presentation]. CHADD 2020, (Virtual Event)
  • Littman, E.B. (2020, Dec,15 ) Why ADHD is Different for Women: Gender Specific Symptoms & Treatments .[adhd experts webinars]. ADDitudemag.com 2020, (Virtual Event)

  • Nadeau, Kathleen G., Littman, Ellen B., Quinn, Patricia O., (2016) Understanding Girls with ADHD. Chevy Chase, Maryland: Advantage Books.

  • Robson, C. (2019, Nov.8) Frenzied, Frazzled and Overwhelmed. [Conference presentation]. CHADD 2019, Philadelphia, PA.
  • Solden, Sari. (2005) Women with Attention Deficit Disorder: Embrace your differences and transform your life. Ann Arbor, MI: Introspect Press.

  • Weiss, M., (2020, Oct. 23). Gender-Related Differences in Functional Impairment [Conference presentation]. CADDRA 2020, Virtual Event.

Transcript:

Moira Maybin 00:05

Today, we’re talking about what we can do to increase the chances of getting an accurate diagnosis. Welcome to the ADHD Friendly Lifestyle, part of the ADHD reWired Podcast Network. This is the place to practice putting on our own oxygen mask so we can breathe and make it possible to show up in our own lives without guilt or shame. I’m your host, Moira Maybin, a woman, mom, educator, and I have late diagnosed ADHD. We can have an ADHD friendly lifestyle that includes more time with our strengths and passions. Less with our challenges, has ways to adjust what and how we do things to suit us better, and expand the ways and places that ADHD is understood and accepted. I suspect many of us have asked the same questions I did. Why is life so hard? Why does it seem easier for literally everyone else? There are things that I wish I had known about my ADHD sooner that are allowing me to make different decisions to make my life better and more ADHD friendly. And I want to share them with you. I finally understand that to live well. My lifestyle is not negotiable. It must work for me. It must be healthy. And yep, it’s got to be ADHD friendly. I want to thank you for choosing this podcast. It is a labor of love for me, and I have been touched deeply by the emails and reviews sharing how my words are helping you. Please take the time to review, share, and subscribe to the podcast on the player of your choice. We’re in this together. If you have questions or ideas for me, you can share them at ADHDfriendlylifestyle.com. While you’re there, subscribe to the podcast and sign up for emails to get every episode delivered to your inbox and be the first to hear what is going on. Okay, let’s get started.

 

Moira Maybin 01:57

When ADHD comes up as a thing on the horizon in our lives, especially if there’s been no discussion or awareness of it earlier in life, it can come as quite a surprise to others around us, including medical and mental health professionals. Even when we get a diagnosis and feel a momentous shift in our own self-perception and identity to others. We are the same person we always were. This is understandable to a degree for some in our lives. But for the medical health professionals we are looking to for support, direction, and answers. That lack of insight into who we are and how we tick. Combined with a general lack of knowledge of ADHD and adults can lead to situations that are less than ideal, the stress of constantly feeling less than a feeling overwhelmed, stupid, fearing rejection. These can become toxic forces in our lives, contributing to poor self-care, depression, vulnerability to abuse, self-harm, suicide, and even earlier mortality. Enough is enough. Today I’m continuing to highlight the work and passion of psychologist Dr. Ellen B. Littman PhD, who like other leading experts on ADHD and women is exasperated, wondering how much more disconcerting these consequences need to be. Before the concerns of women with ADHD get the attention, they deserve. In the previous episode, I spoke about how women with ADHD present differently and that sometimes our ADHD can be discounted, because we’re too good at something. But that’s just not true.

 

Moira Maybin 03:28

A common issue many people with ADHD may face and getting treatment is being told you only want meds. Especially if you have managed despite all the challenges to secure a life position or academic pursuit that has now created a tipping point for you that you just can’t manage anymore. Many of us who are late diagnosed and especially women often experience a tipping point when there’s some sort of hormonal shift in our lives or when we simply can no longer keep up with the demands placed on us. Things that work before don’t anymore. We’re drowning. So um, yeah, perhaps a medication for my neurobiological condition would be great. This wasn’t part of the conversation when I was incapacitated with my autoimmune disease. Or when I was misdiagnosed for the depression yet somehow suddenly now, I’m not responsible enough to manage my health care, treatment or even prescriptions. We’re talking about our quality and lengthen life. To quote the magnificent Jason Sudeikis of Ted Lasso fame, “There’s a big difference in being ignorant and curious and ignorant and acting like a know it all.”

If a prescriber is thoughtful, doesn’t it stand to reason that someone could start a small trial and then use the objective measures, meaning the checklists that are readily available online, including my website to evaluate side effects and benefits? Do the same prescribers follow the best practice protocol of increasing medication dosages until side effects outweigh benefits? Do they discuss with us the multitude of stimulant options? Many of which are not addictive. And how about non stimulant their role in helping emotional regulation, sleep, and frustration tolerance. There are people who have used medications, but most of us don’t. They are our lifeline. If you don’t have a medical professional who is willing to see you, hear you and work with you, it’s time to move on.

Moira Maybin 05:21

So I’m also continuing to shake my head because most women with ADHD are also treated for depression or anxiety without a formal evaluation, and the icing on the cake without considering ADHD. That’s exactly what happened with me. I turned to my family doctor in the years following the birth of my second child, desperate for help. Initially, we tried sleeping pills. Maybe I was just too wound up to get rested. I’d been in therapy was a regular exerciser had pursued meditation yoga. So she kindly explained to me when we’ve tried all the things and they are not working, then we consider medication for depression, or anxiety. I tried it. It helped. I was still often overwhelmed and tired, but it was better eight years like that. I also saw an endocrinologist for my autoimmune disease. My energy and challenges with sleep and overwhelm were frequent topics not once was I ever formally diagnosed with anxiety or depression. In the last four years, while seeking an ADHD diagnosis, suffering a brain injury, and receiving diagnosis and treatment for binge eating disorder. Never have I met the criteria for anxiety or depression. Yes, I show signs of it. After getting my ADHD diagnosis, my family doctor shared with me she had never had an adult patient with ADHD in over 25 years. What the fuck? And that she had would never have considered it for me. I am still so saddened by that, conservatively, that’s 5% of her patient list that was missing out on treatment.

 

Moira Maybin 06:49

In the previous episode, I also discussed challenges with managing our emotions, that they may be right for the situation. But the dial can be turned out way too high on how we are experiencing them, and that there is treatment for that too. I also went into more detail about women with ADHD having heightened central nervous systems, leading to headaches, sleep issues, and many sensory issues with things like sound or touch. Everyone who is experiencing the bare minimum of what I just described, needs to be evaluated for ADHD. Yes, it could be many other things. And I had increasing health concerns that are come over with ADHD, thyroid disease, sleep apnea, signs of depression, anxiety, but it could also be ADHD. It is rampant in my family, and no one was diagnosed prior to 2016. I can look back at relatives, both living and deceased, and clearly recognize their symptoms now, I will never know if my need for medication for symptoms of anxiety or depression would exist. If my ADHD had been recognized or treated earlier. I’m grateful I have meds that help.

 

Moira Maybin 08:01

Women and I suspect all genders with undiagnosed, late diagnosed, or untreated ADHD are more likely to be dealing with low self-esteem, which makes it harder to ask for help. We also experience more anxiety, depression, and psychological distress and just trying to function and survive. So, it will come as no surprise that this has led to a very high rate of women being treated with medications for anxiety or depression before being diagnosed with ADHD largely due to a lack of knowledge of why and how to evaluate women for ADHD. What I think any of us deserve is not to be mistreated or misdiagnosed in the first place by including a thorough ADHD evaluation to figure out what could be a complex presentation of symptoms.

 

Moira Maybin 09:00

I hope you’re enjoying today’s episode so far. I have two announcements to share. Many of you know that I coach one of the sections and Eric Tivers’s award winning program, ADHD reWired Coaching and Accountability groups. We are already in our coaching groups for our summer coaching season. And we are now holding registration events for upcoming 26th season this fall. Registration is taking place this month for the session starting in October, we will have four sections, my group at 6am Pacific or 9am Eastern and three other groups led by Eric Tivers and Roxie Martin. It’s been amazing to be part of this growing community and experience the personal growth that happens as each person builds their awareness, acceptance, and abilities. We can’t underestimate the role of community in this because there is power, strength and support and knowing you’re not alone, and that you are understood. This isn’t just a 10-week course it’s finding the people you didn’t know you needed. If you want to get started right now, go to coachingrewired.com and click on the big orange bar. To get your name on our fall interest list, you will receive an email that has all the instructions about next steps. Registration events are by invitation only. And last season, my group filled up first. So, if you’re interested, don’t wait. If you want to learn more about coaching, and accountability, you can go to my website, or coachingrewired.com click on the orange bar, or blue if you’re overseas to add your name to the list. That’s coachingrewired.com.

 

The other news is, have you heard that our new adult study hall is now open and running 24 seven. If crossing items off your to do list is easier with other people with ADHD doing the same thing. Or if you don’t want to work alone, then you can virtually co work there too. If you have ADHD, and you’re looking for more structure than that adult study hall memberships also include ASH+ (Ash is short for adult study hall), where you can join us in a guided work session with regular check ins on where you’re at with a thing you might have been putting off. We have different ASH+ events on daily like playing with me. Work out with us. Task busters career accelerators. Remember, with Adult Study Hall on demand, you can jump in anytime, anywhere, whenever you might want someone to work there with you come to ADHDfriendlylifestyle.com to find the link so you can get started on your virtual co working community for adults with ADHD in ADHD study hall.

 

Moira Maybin 11:41

Welcome back. Well, there is evidence-based research on the ways women with ADHD experience greater challenges and misunderstanding of their symptoms that prevents or makes it more difficult to receive a diagnosis. It’s time to change that by using this information gained from research to help ourselves and practitioners to increase the chances of getting the right diagnosis and for clinicians to increase the accuracy in making diagnoses. The two most important factors as patients we need to know are number one, go prepared to ask for the possibility of underlying ADHD be considered. And number two, when we describe our struggles focus on those with evidence-based symptoms. You don’t need to have issues in all areas. If we refine a narrower scope and considering our challenges to the areas that have solid research showing how they present, you’ll help your practitioner evaluate your symptoms. Please remember, as I mentioned these 18 areas that you do not have struggles in all these areas. I’m going to start with the ones that are more self-explanatory. And remember, they will also be listed on my website, ADHDfriendlylifestyle.com. And in related articles by Dr. Littman. So, these 18 areas are areas where there’s proven research with a connection to ADHD in women. One of them is a reluctance to read, second, episodes of rage or tears. Third, frequent irritability, four picking behaviors, five, intense premenstrual symptoms, exhaustion, eating dysregulation, chronic anxiety, chronic relationship problems, perfectionistic behavior, and that doesn’t mean doing things perfectly. It means feeling like things are never good enough. substance dependence, sensory hypersensitivities chronic restlessness, internalizing symptoms. Now that is one that I spoke about in the last episode, low self-esteem, a late onset and symptoms for women, particularly around hormonal shifts in life, inattentive symptoms, having emotional dysregulation is a key feature of ADHD, but it was taken out of the diagnostic criteria in North America. But it is still a defining feature in ADHD.

Moira Maybin 14:12

Sometimes when we don’t know what the issues possibly could be, we don’t know that the things that we’re experiencing actually could be related to our ADHD. Not everything is but so many things are. So I hope this list is helpful. Not an overwhelming you, not in creating more work for you to do, but maybe just to sit and reflect some time about Holy crap, I am anxious all the time, or I never can get enough rest. Or I have really light sensitivity from my entire life. Things like that just might help get your diagnosis. I’m not going to leave clinicians out of this. As we know they are critical to our well-being getting information that is timely and trustworthy is hard. Time is short. Unlike all of us, medical professionals are motivated by their own interests and ability. And if knowing about ADHD is not your doctor’s jam, then there’ll be much they don’t know.

Moira Maybin 15:10

For clinicians to improve diagnostic accuracy, their evidence-based issues to explore in their evaluations of patients. For us, we have to take responsibility of our own health care. We need to be aware of these issues as well. If we find that they’re not being considered or being evaluated, that’s a huge red flag. There is a proven gender bias in how ADHD is diagnosed, treated, supported and understood is an awareness that needs to be at the very beginning. Another important evidence-based consideration is to shift from a behavioral model of how ADHD presents to an impairment model, meaning more emphasis on how the impairments can affect us rather than how we’re overtly behaving. Remember I mentioned tipping points? Due to the changing state of hormones in anyone who has ovaries, our body and brain chemistry, a person with a cycle will present for evaluation very differently while menstruating compared to well in another phase of their cycle. Women can have a later appearance of symptoms when they can no longer hide or manage them as expectations increase with age. That means for some of us, there may be minimal childhood symptoms. But for all of us, our impairments worsen over time, due to those lovely hormones, and other reasons I’ve mentioned.

 

Moira Maybin 16:31

So, what to do if you and your health care provider are trying to tease apart a complex presentation, especially if you have a subtle, less impaired presentation? Well, consider those internalized qualitative impairments, distinguish between primary and secondary anxiety or depression. See if there’s any comorbidity secondary to ADHD, or history of impulsive sexual behavior. Again, it is extremely important to consider how motivated women with ADHD are at masking our symptoms –this may mean a subjective, plus objective measures, including trauma informed interviews can be helpful. As patients long term monitoring is needed to tease us all apart. Despite growing understanding about ADHD in general, understanding ADHD and women and when or how to include evidence-based methods to consider ADHD diagnosis and women remains misunderstood. By encouraging our practitioners to increase their knowledge as well as building our own, we can expect and demand that we get the health care that we deserve.

 

Moira Maybin 17:47

Okay, you’ve done the hard work by staying to the end your reward. Here are the main takeaways from today’s episode. Despite growing understanding about ADHD in general, ADHD and women and getting an accurate diagnosis still remains a challenge for many, and it can include unique challenges such as being asked to justify our experiences, needs an even diagnosis when our ADHD is different from the stereotype. Also being diagnosed with or treated for anxiety or depression without a formal evaluation, or even considering ADHD. Third, you’re dealing with a prescriber who seems intent on guarding access to meds, not your well-being. If you don’t have a medical professional who’s willing to see you, hear you and work with you, it’s time to move on. Finally, to increase the chances of getting the right diagnosis, both women and clinicians need to up our knowledge about ADHD and women. Until this knowledge is common. We may be at the forefront of information about ADHD. We must lean on each other and share what we know. When we visit the doctor, we need to be prepared to ask the ADHD to consider and shape our discussion around symptoms that there is already strong research in. If you don’t feel strong enough to do this on your own, how and where can you ask for help? If your health care provider is willing to learn, you can share this podcast or the many related links on my website. In the following episode, we will discuss what supportive treatment can look like.

Moira Maybin 19:16

I hope you enjoyed today’s show. This is the place for the late diagnosed women moms professionals. Those who want to understand ADHD be heard and know they are not alone. An ADHD friendly lifestyle is for those of us who are done with trying harder and want healthy, sustainable lives that pay attention to our own particular needs and challenges with ADHD. We want to have the capacity to pursue our goals, dreams and passions with more joy and ease and have tomorrow be a more ADHD friendly day. I’d love to know your thoughts about today’s episode and appreciate questions you’d like to hear on the show too. All questions will be anonymous respected and appreciate it and I can’t wait to continue this conversation with you. To get in touch you can check out my website, ADHDfriendlylifestyle.com. Email Moira@ADHDfriendlylifestyle.com. Please remember, I am not a doctor. The information presented in this podcast does not replace the individual recommendations from your health care providers. You can help by subscribing to the ADHD friendly lifestyle on Apple podcast or the podcast player of your choice. You can also help spread the word by sharing this podcast with the people in your life and by taking the time to rate and review. I am thrilled to be part of the ADHD reWired Podcast Network. With this show being its latest addition. There are four other shows ADHD Diversified with MJ, ADHD Essentials with Brendan, Will hosts Hacking your ADHD, and Eric who brought us all together hosts ADHD reWired. All of these podcasts, including the ADHD Friendly Lifestyle are available to everyone, everywhere podcasts are available. You can join all of us at our live Q&A every second Tuesday of the month at 10:30am. Pacific to ask us question, go to ADHDrewired.com/events and register. And now for tell me you have ADHD without actually telling me you have ADHD, “headphone wires, twist and pretzel in my very presence.” If you want to tell me you have ADHD without actually telling me you have ADHD, visit ADHD Friendly Lifestyle on our Facebook page and continue the thread there. Maybe you’ll hear yours on a future episode. Thanks for listening. See you later.

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THANKS FOR LISTENING!

Moira Maybin, M.Ed. (EdPsy.)

Moira Maybin, M.Ed. (EdPsy.)

I help people with ADHD who are tired of trying harder and are ready to give up the struggle. This is the place for the late-diagnosed, women, moms, professionals, those who want to understand ADHD, be heard, and know they are not alone. An ADHD Friendly Lifestyle builds our ability to take care of ourselves and use our unique strengths and talents to create a life that works for us.

Moira Maybin, M.Ed. (EdPsy.)
Moira Maybin, M.Ed. (EdPsy.)

I help people with ADHD who are tired of trying harder and are ready to give up the struggle. This is the place for the late-diagnosed, women, moms, professionals, those who want to understand ADHD, be heard, and know they are not alone. An ADHD Friendly Lifestyle builds our ability to take care of ourselves and use our unique strengths and talents to create a life that works for us.

I help people with ADHD who are tired of trying harder and are ready to give up the struggle. This is the place for the late-diagnosed, women, moms, professionals, those who want to understand ADHD, be heard, and know they are not alone. An ADHD Friendly Lifestyle builds our ability to take care of ourselves and use our unique strengths and talents to create a life that works for us.

Moira maybin, M.Ed. (EdPsy.)