The Good, The Bad, and The Ugly: Living with Undiagnosed and Late Diagnosed Adult ADHD

Alexis Williams-Cavanaugh Headshot

Pronouns: She/her

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TW: Includes mentions of suicide and suicidal ideation

Receiving a diagnosis for ADHD is not a magical cure (not so fun fact: there is no cure for ADHD). The reality is that a diagnosis for adults living with ADHD can potentially be life altering, and the lack of ADHD diagnosis and treatment can be even more life threatening than it is for those working toward managing their ADHD symptoms.  

This is not an exaggeration, or a fear tactic type hook simply geared at keeping you reeled into this blog – though you totally should read the entire blog, and then share it with your friends.  

THE ADHD DIAGNOSIS CRISIS
In the U.S., one of the primary reasons many American adults are living with undiagnosed ADHD is because of the lack of universal healthcare, and a truly insufficient amount of funding for quality mental health treatment across the board.

While there are several marginalized groups of people that are less likely to be screened specifically for ADHD even when showcasing ADHD symptoms, some of the most stark or noticeable disparities exist when it comes to racial and ethnic identities for Black, Asian, and Latino folks in comparison to those who identify as white or European in receiving an ADHD diagnosis.

Women too have been historically diagnosed at lesser rates than men in both adulthood, and childhood for ADHD.

Though women have been diagnosed with ADHD less, studies also show that women have a higher rate of seeking out assessments for ADHD and other mental health related diagnoses.

I believe that the reasons I personally was diagnosed much later in life were because

  • I lived in a rural area with a limited amount of healthcare providers in general, and significantly less specialists
  • I masked heavily for many years when and where I could, giving 200% even at the expense of my wellbeing 
  • I am Black and white, mixed.  It was hard for people to really understand me in that way in the late 90s, early 2000s given the area I was raised in, so many things I did were chalked up to me being mixed, young, “animated”
  • All of the K12 teachers who noticed my ADHD symptoms viewed my behaviors, abilities in the classrooms as reflections of what I “desired to be ‘good’ at” never questioning if I potentially had something going on in my brain causing me to not be able to complete things in the ways they desired out of spite of them
  • I was viewed as a drama queen rather than a kid, teen with emotional regulation and attention problems

LIVING WITH UNDIAGNOSED ADHD AS AN ADULT
To not understand some of the quirks, struggles, and general things that I deal with related to my ADHD before receiving my diagnosis was a challenge the 24 years that I lived with undiagnosed ADHD for many reasons, but especially because I felt so alone in my differences.

“Why am I so emotional, emotionally intelligent, impulsive, late, spacey, forgetful, intense, quirky, all over the place, creative, straight forward, eccentric, d i f f e r e n t?” These types of questions can cause one to develop additional conditions such as depression and anxiety.

The longer that one lives with undiagnosed ADHD, the higher the chances of these symptoms being simply seen as character and personality traits, personal choices rather than result of living with undiagnosed ADHD.

Adults living with unmanaged ADHD have higher chances of struggling with

  • Building and or sustaining healthy relationships with family, friends, colleagues, community 
  • Managing finances in a way that ensure financial security 

Keeping up with day-to-day tasks around the house and for self

  • Abusing various substances oftentimes as a result of lacking in dopamine, and lack of self-regulation 
  • Behaving and living within the confines of what society deems as acceptable, seen as oppositional or defiant

A 2017 study conducted on 5,693 Chinese medical students was facilitated to better understand whether there is a relation between ADHD and suicide rates for medical students diagnosed with ADHD, and those medical students not diagnosed with ADHD.  

The study’s results showed that the medical students who are diagnosed with ADHD were 6x more likely to engage in suicide attempts, having suicide plans, or living with suicidal ideation.

The reality is that when combining some of the symptoms for people living with ADHD such as impulsivity, and lack of meeting up to societal expectations of “what adults should be able to do, how adults should do things,” this can result in a lack of desire to participate in society.  

But when one also combines the fear of rejection that many people living with ADHD struggle with, and the same struggles, the place that many individuals living with ADHD mentally go to is the lack of desire to exist anymore because it can seem like meeting up to other people’s expectations may never actually be a possibility for us. 

LIFE AFTER RECEIVING AN ADHD DIAGNOSIS
Again, receiving diagnosis is not a magical cure, but it does allow for folks the ability to learn how to manage their ADHD from fellow people with ADHD, to do research on ADHD, and to implement life changes that may help.

Some of the many challenges that come after receiving an ADHD diagnosis may include misdiagnosis, comorbidities (more than one diagnosis to figure out simultaneously), medication exploration, finding community, and acceptance. 

Ultimately, this journey of managing one’s ADHD isn’t a simple feat for many adults living with ADHD whether diagnosed or undiagnosed.  

Even when one does receive a diagnosis it’s important to note that even though
the medication does not always work,
the world we live in is not always truly inclusive of those with mental and neurodevelopmental differences,
the ability to do tasks is not always possible, even with meds,
the empathy or understanding toward your ADHD’s impact on your life is not always going to be there,
the impulsivity, spending, feeling everything, and academic or work stressors do not necessarily dissipate…

YOU ARE STILL WORTH THE WORK. 

No matter how many times you must find a new routine, buy a new planner, or feel like you need to buy another book or subscription to hack your little beautiful ADHD mind – you’re worth the work.   

You are worth the energy, time, and infinite number of resets that may be necessary to help in managing your ADHD so that it doesn’t have full control over your life.  

Even though your journey may be one that you’re on alone in a physical sense, you aren’t alone in your aloneness. 

I’m truly still learning how to manage and live with my ADHD as well.

Of the many things that my ADHD diagnosis gave me, the most important things that the diagnosis has given are

  • The desire to learn more about how ADHD and my other diagnoses may impact me now or in the past
  • The ability to accept that the journey of accepting and working with my brain is on me to navigate 
  • The reassurance that I am worthy of living a life that allows me to work with, rather than against my ADHD brain

My diagnosis gave me the ability to find resources and community allowing me to connect with people that have experienced many of the things I have that I never knew about, and that I now realize are likely due to ADHD. 

The more awareness that is raised regarding how ADHD typically shows up in marginalized adults, and the more work that is done toward creating a more equitable, neuro inclusive society designed with those both undiagnosed, and diagnosed in mind, the less harm we will see to those living with ADHD and other neurodevelopmental conditions.

Sending love and light to all my undiagnosed and diagnosed homies,
AD your homie with ADHD