The most difficult thing in life is to know yourself.
Thales
Today, I want to talk about knowing. More accurately, I want to talk about what knowing has done for me. If you recall, in my diagnosis post, I recalled a doctor from 2 decades ago who once told me that having a diagnosis would not help me and would only hold me back. I mentioned that this was one of the many ways that I had been let down by the medical community, but I didn’t go into detail about why. What I want to talk about today is how I know, in hindsight, that he was so incredibly wrong.
To preface…
I want to preface my incoming thoughts with something that is important to me. The journey that I am on would not be possible without access to health insurance and healthcare. I am keenly aware that not everyone has that privilege. I have been one of those people and I know how awful it is to feel like you’re drowning and no one will throw you a rope unless you pay them. I once walked into a mobile crisis center and said, “Please help me before I hurt myself,” and they turned me away because I did not have health insurance.
When I decided to start advocating for brain health and brain illness, and later ADHD, the thing that gave me one last push was our inadequate healthcare system. I tell my story as my experience only, but I want to acknowledge all of the people who cannot make it to their path to recovery because it is not available to them. It should never happen. It is a travesty and an outrage.
I will keep up the fight for change by speaking out, educating, and joining legislative campaigns for better healthcare. I will write letters and tell my story and educate misinformed people…and anything else in my power, to make a change for me and you and for all of the people who are like us. If you are interested in joining the fight you can visit The National Alliance of Mental Health’s (NAMI) Advocate For Change page for a list of resources.
On to the main event
When I trepidatiously asked my doctor for a diagnosis, she told me then that she could say with almost certainty that I had ADHD, but agreed we should evaluate to be sure. As soon as I got home, I started doing research and I identified with much of it and started to agree with my therapist, wholeheartedly. By the time I took the evaluation and got the results, I knew for sure that I had an ADHD brain before she told me.
I did not *really* understand ADHD, not even after my daughter was diagnosed 3 years ago (despite, SURPRISE!, tons of research). Most of the symptoms and behaviors that I have, and they are many, I never even brought up to a doctor because I thought that they were personal deficits. The research for parenting a child with ADHD does not help you understand what ADHD is doing to your child on the inside; the things that you can’t see. Most of the information that I found on *having* ADHD was mostly written in clinical verbiage, with few clear examples of how these things affect a person in their day-to-day life.
This is where social media entered the scene. I joined several Facebook groups and then I headed over to Twitter and I searched “#ADHD.” I spent hours pouring over people’s real-life experiences and reading their questions and the answers that they were being given by people of all races, ages, classes. It knew no bounds.
There were times when some experiences that I read were so poignant to me that I found myself weeping. There was a lot of head nodding in the affirmative and a lot of gasping in recognition. More than once, I felt a sense of relief and validation so intense that I was overcome by emotion. I felt validated and seen. I felt relief; letting out a breath I didn’t even know that I was holding.
These things that I never talked about in shame were happening to other people. Other people hold their pee for too long for no real reason. Other people have problems keeping their houses clean. They, too, forget what they are saying right in the middle of their sentence and spend several hours a week searching for their phone, their keys, their TV remote…I had found my people.
Knowing changes everything
So here is why I want to talk about the knowledge of it all. I cannot express to you the amount of forgiveness, love, and kindness that knowing has allowed me to show myself. I feel a newfound belief that I deserve kindness, empathy, and respect from the people in my life and I’ve found a new resolve to defend myself and set healthy boundaries to protect myself. I understand myself in a way that I have never been able to, in 38 years, and that allows me to demand more of myself and for myself
I haven’t just researched ADHD. I have also been doing a lot of research on C-PTSD and OCD. Again, I only understood the surface of these 2 disorders and, honestly, I was confused about how they applied to me. Once I did the research, I was left with little doubt. I’ve learned how my brain works and why I do (or don’t do) some of the inexplicable things that I do. I’ve learned to notice when things are out of my control and even starting to notice some of the environmental factors that make things worse for me. Knowing how and why my brain works will make it easier for me to start applying coping tools and mechanisms that I learn along my journey.
My message here is that knowledge can be really scary; facing down recovery can be terrifying. At the end of the day, though, the knowing is what set me free. A dear friend of mine told me today that these new blog posts feel different from my old ones in that they seem like they are coming from “an optimistic person with an excitement for what her future holds.” What an amazing compliment! That new tone comes from knowing and understanding myself for the first time in my life. Knowing truly changed everything.
Love and light and fight the good fight.💜💜
This is so accurate! I felt the same way when I received my diagnosis- but, as they say, know thyself. Sounds like you’re well on your way!
Thanks for the post. After all of your research did you come across the definition of HSP? I ask because it seems like you still believe that you have a disorder versus your brain works differently than (maybe) the majority. Is it that millions of people have something wrong with them OR society has defined “normal” as the assertive doer and everyone who does not fit that description must be wrong?
I actually believe both things to be true. I believe that I have a disorder and I believe that my brain works differently than the majority. However, I would still have a disorder even if society were structured differently. No matter the outside influences, I forget to shower, eat, and use the bathroom. I forget things and misplace things every day. My inability to “focus,” for lack of a better term, doesn’t just affect the things that I don’t want to do. Sometimes it makes it so that I can’t do the things that I love doing.
I agree that we are living in a society not built for us. It makes things worse; traumatic and miserable. But I would definitely still struggle outside of capitalism.
Why is that not just a challenge you need to find tools to help with versus a ‘disorder’ which, to me, says that there is something wrong with a person. I am sure that you have some amazing abilities that others do not have. So if someone can’t do what you do, does that mean that they have a disability?
Thanks for the conversation. I think a lot about this and really want to disrupt the view that kids especially have a disorder if they don’t fit the box.