“This is slavery, not to speak one’s thought.”Euripides
Speaking out is hard to do. I spend a lot of time in blogging groups and reading other bloggers all over the web. I’ve noticed one piece of advice pop up over and over that I think is great advice, especially when it comes to mental health advocacy. Remember your why. When you doubt your abilities, remember your reason. When it feels like no one is reading, think about your why. It got me thinking about what led up to my decision to start a blog and why I feel so strongly about being open and honest with the world about my brain disorders. Speaking out about mental illness is a hard decision for many and impossible for others. So why am I speaking out? And why now?
First I should start by saying that I never *hid* the fact that I have mental illnesses. One of the ways that my ADHD presents is oversharing and I never really felt ashamed of the fact that I had mental illnesses. What did cause me shame and distress were my symptoms. I didn’t realize that a lot of them were symptoms, so they were just parts of me that I hid in shame. I might tell my friends that I was feeling depressed, but I would leave out the fact that I was researching suicide for hours earlier in the day. You might find me in a puddle of tears and I would tell you about the pain, but I didn’t talk about the fact that I hadn’t brushed my teeth or showered in days. I wasn’t open about the truth of mental illness, only that I had it.
At the beginning of 2020, I was finally coming out of a 6-year-long whirlwind of mental illness. I was beaten, broken, and raw. I had lost relationships that I believed would last until my last breath. My trust in the world had been broken and I was angry. In February, I ran into an issue with the pharmacy/insurance company/doctor’s office and I ended up being without my medication for 4 full weeks. This was not an isolated incident with me. This type of thing has happened to me, with my medications or my daughter’s, dozens of times over the years. Some clerical glitch; a new insurance company has new rules; the pharmacy is out of your medication and they have to order it. It always seems to be something.
Often it’s something that requires quite a bit of effort on my part. Here’s the thing…ADHD people hate doing clerical things, especially making phone calls. Sometimes we’ll be sick or hurt for days or even weeks before we’ll pick up a phone and call a doctor about it. So I’m always the middle man between these 3 entities in my life. I have to call one, then I have to call the other, then I need to call the first again, then the last one, etc. It’s all very confusing. My brain HATES it…avoids these types of calls at all costs. Sometimes the cost is high.
Anyway, this is what happened to me that February. I was without medication because I got stuck in a hoop-jumping-phone-call-making whirlwind and the result was no medication for the entire month. I was okay by the time I finally got it filled again, but I started thinking. This doesn’t just happen to my family. This happens across the country. Red tape keeping people from life-saving medications. Psychiatric drugs, like psychiatric care, are often treated differently by insurance companies, especially if the “tried and true” drugs don’t work for you. How many people had this happened to and it caused them to spiral? I started thinking of the times that I went completely untreated because I was uninsured and didn’t have the money to get the care I needed. There were even years that I needed treatment, had insurance and didn’t get any help because I let the stigma of taking medications get into my head. Even now, with great insurance, I barely afford the care I receive.
Light my fire
I started researching ways that I could help; ways that I could make some kind of a change. I looked back on my struggle and all the hell I had been through because of mental illness; the way people treated me, the attitude of employers, and the lack of adequate healthcare. The information that I found was plentiful and I kept seeing the same thing, article after article and blog after blog. Tell your story. Normalize mental illness simply by talking about it, posting about it, and bringing light to it. So, that’s what I started doing. I started posting memes on my social media, mostly funny things, but to shed a light on things that I go through with mental illness. I talked about it loud and I talked about it often.
I was surprised when several friends contacted me at the time and told me that my being so vocal about my mental health, going to therapy, and my journey toward a thriving life had inspired them to contact their doctor about medication, seek out therapy, or research their mental health symptoms to try to learn more about themselves. I had already started the blog at this point and I was working on telling my mental health story. Each post was centered around one decade of my life. My issues started when I was a small child, so there was plenty to write about. But things got hairy. I was writing about deeply emotional and traumatic memories. I was laying it all out to bear and it started to scare me. I started having panic attacks almost every day. After talking with Dr. W, I decided to put the blog on hold indefinitely.
For the rest of the summer, I was in and out of various degrees of my mental illnesses, but I was managing. In August, I got the courage to ask Dr. W if we could do some kind of evaluation to find out what was wrong with me once and for all. I had no expectations. I had read some ADHD symptoms that I identified with, but I didn’t even think it was a possibility, honestly. Dr. W seemed hesitant, at first, like she didn’t understand what I expected. I wanted to explain to her that I was pretty sure I had Executive Dysfunction, so I explained that I had found the term while researching ADHD for my daughter. Her eyes lit up and she said, “Oh, you have ADHD. I thought you already knew that. I could have told you that a year ago.” She agreed to the evaluation and we both felt like getting a concrete diagnosis would help us to plan our next steps in my treatment.
A diagnosis changes everything
Long story less-long, by the last week of September, I had a sparkly, new diagnosis. A bunch of them, in fact; ADHD-Inattentive (formerly known as ADD), Persistent-Depressive Disorder, Generalized Anxiety Disorder, OCD, and C-PTSD. None of them was a real surprise, though I didn’t know much about some of them. What I did know, by the last week of September, was that I definitely have ADHD. I had done so much research on ADHD, I couldn’t see straight. I had found myself in the words of strangers on the internet. These people knew my struggle in a way I never could have understood. I was armed with new information and it opened up everything. Even before I got the official word, I knew beyond a shadow of a doubt that I have an ADHD brain. I also knew that I could get better, from all of it; the trauma, the anxiety, even the ADHD could be tamed and controlled. I had hope, probably for the first time.
I also got angrier, for all the old reasons. They try to tell you to let go of anger, that it’ll eat at you. Generally, “they,” are right…but not all anger is unhealthy and some anger can be productive. This anger, mixed with all that hope I mentioned, lit the fire in my belly again. This time, I came up with a plan and I started up the blog again. One thing that I realized was that I didn’t know a lot about some of the disorders I had. I had a skewed perception of what ADHD, OCD, and C-PTSD are and it affected me twofold; first, my symptoms were often scary, distressing, or shame-causing because I didn’t know what they were. Second, I couldn’t advocate for myself in the medical community because of the way these disorders are represented in the media. I wanted to make sure that what I was writing was educational, but with a human perspective; how these disorders affect me in my daily life. What do they mean for me?
My new goal for the blog was to educate people who didn’t understand the things that were happening inside them, advocate for those of us who haven’t found our voices yet, and be a part of the community around ADHD and mental illness. Because I have been off since December, I have put hours and hours into it. Testing things out, throwing out the things that don’t work, writing down ideas for later. Sometimes, I get lost in the details. I get worried about how many Twitter followers I have or how many views I’m getting on the blog and I start to feel discouraged. Sometimes imposter syndrome creeps in and my brain tells me I’m not good enough, that I could never make a difference. I have to keep my focus on my why.
So, all of that said, what is my reason? My reason is me. You. Your loved one. My reason is change. Truth. Justice. Fairness. My reason is fighting to bust stigma. My reason is this: All of us are born normal people. Some of us have an extra load to carry and we are often punished and ridiculed by society instead of being cared for. It doesn’t happen for any other illness or any other disability. We care for little kids with diabetes or thyroid disease; we scorn and ostracize kids with ADHD or anxiety. Little kids. Someone has to fight for them. Someone has to fight for us. Change won’t come until enough of us speak out and speaking out will always be dangerous as long as we stay hushed. Each of our voices makes a difference and am I proud to join the chorus of voices who speak for all of those with brain disorders.
How can you speak out?
I know that it is not safe for everyone to speak out. Some people were born in communities where dark stigma is attached to mental illness. Some people are, very rightly, scared for their jobs and their livelihood. Some people just don’t have a safe space. Any reason that you have for not being public with your mental health status is valid and real. I see you and I recognize your struggle. For those of you who are interested in speaking out, but aren’t sure where to start, I came up with a list of ideas that have been useful for me in my search for information:
- Educate yourself and then spread your knowledge to your family and friends. There are tons of educational memes, YouTube channels, even Twitter threads, that are factual and easy to understand. One great resource that was recommended to me by Dr. W and later became a valued source of information is How To ADHD. Her videos are short, packed full of great information, and easy to understand and process. She has videos that are great for learning about your ADHD and tools for taming it and tons of videos to share with loved ones to help them better understand your brain.
- Join a Facebook group. I am a member of so many great Facebook groups. The anonymity can be comforting and makes it easier to be honest about what you’re going through. It’s a great place to find answers to questions, vent, and even make connections with like-minded people. The groups get pretty specific. I’m in a couple of groups specifically for mental health bloggers!
- Speak out on Twitter and social media. You can use memes and screenshots and add your own commentary in the captions or you can tell your story in whatever feels right for you. This was one of the first avenues that I took when I decided to speak out. My Facebook page is private, so it was like dipping my toe in the water. The response was largely positive and I decided I wanted to speak to as big an audience as I could, so I started using Twitter and Facebook groups to reach more people. You can find me on Twitter @amboinreallife or you can join my Facebook group.
- Start a blog. I’ll be honest, starting and maintaining a blog is hard work and takes a lot of time. But some people maintain their blogs as a hobby or a side-hustle, which is what I plan to do when I go back to work. My therapists all agree that blogging is a healthy coping mechanism and it is truly is helping me heal. I don’t know if anyone ever reads them all the way through, but it feels good to think that I’m helping people. It’s a great way to make your voice heard.
So there you have it. The story of why and how I decided to speak out. I’ll be honest, a lot of it was anger. More of it was hope. And, of course, my reason. To make the world a better place for people like us.
Love and light. Keep fighting the good fight.💜💜