I lived Most of My Life with Undiagnosed ADHD, and I am Thrilled to be Alive

Here’s the original reason I wanted to start this blog; I have ADHD and anxiety, sprinkled with a little reading disorder, and I only just got diagnosed about 5 years ago. I am in my early thirties, married, with one live child, and I think I am a mess most days. Sometimes it’s fine, and other times I wish my meds were safe for while trying to get pregnant/being pregnant/breast-feeding. To clarify, I am not on my meds while writing this post, and writing this has taken a very long time...a very..long...time.  

Why did it take so long to get a diagnosis and support? I think there are two answers to this question. The first reason comes alongside my belief that I am not the only person in my family with ADHD and anxiety. My generation’s parents generally seem to agree that diagnosis and support is hugely beneficial for kids in general lifelong, but individually their own kid is absolutely perfect and doesn’t need help because that would be shameful. Support and labels seem to be taken as a direct reflection on their performance as parents. That feeling is not founded in anything logical, but that’s still how we live. So I went 25 years with significant and unchecked anxiety and ADHD, until I leaned into finding out why I couldn’t keep up with my peers. To be clear, I am a parent, I understand the desire to see your kid thrive, having nothing ‘wrong’ with them. But my child has epilepsy, and even before the seizures, he has always had a doctor concerned about something, so I intimately understand the heartache of finding out your child needs extra or specialized support. But I am also very familiar with the fact that not looking for support, especially in cases like my son’s, can be akin to neglect. I don’t believe that my not being properly assessed and supported is actually neglectful, but it certainly doesn’t make for a healthy and overall positive childhood experience, and I wish that could have been avoided. Who wouldn’t?

The second answer for why I think my invisible disability flew under the radar is as a result of research that hadn’t really been done when I was young. That is, ADHD looks very different between boys and girls. When we think of ADHD in general, we think of a hyperactive little boy in school who is bouncing off the walls, sometimes literally, and who maybe has an agile Education Assistant keeping tabs. Few people think of the little girl daydreaming at her desk, with a messy work space, very few completed assignments, and impulse control issues. Impulse control is a big one, that can lead to weight gain issues because seeing something yummy becomes wanting it really quickly, and it can cause strained relationships because they frequently just say or do things that they didn’t have time to think about. Girls rarely have the same outward expression of ADHD as boys, and as a result, more girls fall through the cracks.

ADHD is not more common in boys than girls, it’s just easier to see.

 

Attention Deficit Hyperactivity Disorder, or ADHD, has had some updates since I was little. Back when, I probably would have been given an ADD diagnosis, or Attention Deficit Disorder. Now, everyone is given the same diagnosis but on a scale and with a classification: Hyperactive or Inattentive. From what I understand based on my investigation as well my doctor's explanations, the ‘H’ in ADHD refers to the brain activity in people with this disorder, rather than their physical energy level. Generally, the brain activity of people with ADHD and people previously thought to have ADD looks the same, but the outward expression is different. That’s how we now have the two different types of ADHD, rather than having the same group of people split in half by two different diagnoses. This is helpful, because with better understanding comes more effective support.

 

For me in grade school, that wandering mind in class was frequently followed by feelings of embarrassment and incredible shame when I was called on in class and didn’t know how to answer, and then fear for how my parents would react when my teacher told them that I was doddling with my work. No one knew and I didn’t know how to tell them what my struggle actually looked like in my head, so the response was some kind of negative concequence. I suppose I understand now, but at the time that thought just caused a flood of emotions that led to another daydream, internally freaking out about what I expected to happen later, trying to figure out a way to somehow escape it. And because of that spiralling daydream, I would lose another half hour. No joke. This has been cyclical for my entire life.   

 

For a long time I thought there was something very wrong with me, like I must be such a lazy and broken person. I thought I was of average intelligence, like I understood all the concepts I was meant to learn in school but as soon as there was homework or a test I imploded, and my grades reflected that. I had one teacher suspect a learning disability in grade 6, the reading disorder I mentioned, so my parents sent me to a learning centre to be assessed. The problem with that is they aren’t qualified to make any kind of formal diagnoses or assign designations. That meant that the programming that my 6th grade teacher started implementing for me didn’t carry over through the rest of grade school, and when I miraculously got into college and started looking for support, I had nothing to prove I was eligible.  I was trying to hold down a full- and part- time job, volunteer with a youth group as well as Sunday church services, attend a weekly bible study and do homework for a full college course load while still having my lights out by 11:00pm every night...ya right. The expectations were too high, and the help was not there. 

 

So after 2 years in college and watching my confidence and self worth drop through the floor, I finally failed out, and as backwards as it may sound, it was such a relief. I didn’t have a choice anymore, I had to let it go. Naturally, this is when I had a mental break down. I moved out, tried to advance in the grocery store I was working in at the time, and started jumping from one rough or dangerous living situation to another. Eventually I gave up and asked my parents if I could move back in to go to school again. I threw myself into the one subject I’d always been sort of good at; American Sign Language. It’s a beautiful language that holds a key to a vibrant and colourful culture and community that seemed to accept me as I was. That’s something I had always been so desperate for, was to just feel allowed to exist as myself. It helps a lot too that it’s visual, rather than audible. So I didn’t get overstimulated in class because the 'no noise' rule was strictly enforced, and my easily distractible brain was always focused on the person talking because they were always moving. I did pretty well in the two programs that I completed. That solidified in my mind that I needed help. 

 

ADHD makes doing anything challenging UNLESS you’re doing something you’re passionate about. If you’re passionate about the subject, ADHD allows a hyperfixation that can drive you for hours on end...Hours! I have never done well in school, until I got into the ASL programs. 

 

Then I tried to attend a social worker certificate program and plummeted again. I got married and wanted to start a program that would lead into a job I wanted to do that would make more than minimum wage, but I was afraid I would fail yet again. Thank the Lord for a supportive and understanding spouse. I asked my doctor for a specialist referral and got a diagnosis. That was one of the best days in my life. Someone (other than my husband) told me that it’s not all my fault, and that I’m not a waste of a person. 

 

I got support, I got meds, got into the course to become an Education Assistant, and I did really well. That was one of the most frustrating times of my life, because I did well. It felt very much like my 13 years struggling in grade school and 2 years failing at college were completely wasted time and effort. 

 

I hated myself for most of my life. All of my memories growing up are defined by fear and shame, and all of that compounded in my young adult life with not knowing sometimes day to day if I was in a safe place. I thought I was basically useless and unwantable. It has taken 7 years so far of counseling, education and research, support from my husband, and more counseling to start undoing all of that for myself. 

 

I have some resources available to me, and the ability to find where I can access them on benefits when I’m in a financial pinch. It’s not lost on me that I am lucky to have what I have for support. I know there are a lot of people in the same situation without the same resources or ability to access them. I believe this is a failing of our medical and education systems to keep up with current research in order to keep people supported and safe. I’m not an expert on my own diagnosis. But I keep learning more, for example, now I know that having pre-existing anxiety and depression makes perinatal and postpartum anxiety and depression more likely and/or significant, and I really struggled. 

 

I want to note that I’m not blaming my family for the things I experienced as a result of not getting support for my ADHD and anxiety. I flew under everyone’s radar for more than 20 years. But I have experienced some significant trauma as a result, and there needs to be a separation so that I can acknowledge and deal with my experiences in a healthy way without worrying that it might cause someone else to have hurt feelings. Every person needs that kind of space at some point.

I have daily struggles with keeping my mental health in check. I am terrified everyday of things that probably won’t happen. Periodically, though not nearly as often as it used to be, I have to check myself to keep my anxiety from turning into something obsessive compulsive or self destructive. There’s still so much to learn, and so many things I need to do differently than most people. But I’m finally on track, and now I can share how this affects me as a wife and a mother, and as a para-educator and as a student (yes, I’m planning on going back to school, and it’s freakin’ terrifying!). Now I can be in control and start to have some fun with it! It does allow me to keep up with my son physically and cognitively which I hope makes his life better, and helps me recognize when there’s too much going on in a situation for him to learn something effectively, because I’m probably also overstimulated. I think learning about myself and my needs, and knowing that I need to work on myself everyday, has made me a better mom and a better wife. I’m going to ride that as long as I possibly can!