Awareness, Support, Development

I wasn’t diagnosed with ADHD until I was 28 years old. At that point, I’d been working with autistic children for seven years and had done a fair amount of reading about ADHD as well as autism (and mood disorders and personality disorders and emotional abuse). I had a Bachelor of Music in Composition and had done the coursework for a three-year Bachelor of Arts in Psychology. I’d also flunked out of a Bachelor of Music Therapy after only one semester. My home was a disorganized, chaotic mess, I was constantly struggling to be on time for appointments, and I was attending women & self-esteem group therapy on a weekly basis, through the place I was getting counseling from pre-diagnosis.

When I was diagnosed, I sent an e-mail to my brothers, my parents, and my best friend, telling them about the diagnosis. I didn’t tell anyone else about it. I said it was so I could see if they noticed a difference once I was on medication, and that was certainly part of it, but there was another aspect to my reticence: I didn’t want to have people write me off because of my ADHD.

You see, at the time, I had some friends, most of them male, who also had ADHD diagnoses. Some of them were on medication, some of them weren’t. Those who weren’t on medication were very strident in voicing their rather negative opinions about medication. They were also deemed undependable and disorganized by our mutual friends. Those who were on medication weren’t vocal about their ADHD. They were responsible and clearly made an effort to fulfill their commitments.

One of the things I have always been (besides an ADHDer) is anxious. I worry about things. This has resulted in a few things: (1) I am a perfectionist, and I hold myself to incredibly high standards; (2) I overcompensate for my ADHD traits whenever my commitments involve other people; and (3) I have anxiety attacks from time to time. (The psychologist who diagnosed me said that I was on the verge of developing a full-blown anxiety disorder.)

When I was diagnosed with ADHD, I was working full-time with children with developmental disabilities (not just autism). I was also very active in a Christian youth community. Everyone expected me to be organized and well-prepared, and I generally was. I held keys to churches. I organized and planned events. I took meeting minutes and formatted them perfectly and distributed them well ahead of deadline. I gave talks that actually flowed and made sense.

But there was a cost to all of this, as there usually is. I was always anxious, always stressed about something. I was irritable. And, being an introvert, after I’d spent all that time around people, all I really wanted to do was hide in my home and snuggle my guinea pigs. So that explains my home being unpresentable, if nothing else.

Because of all of the things I strove to be to others, and because of the stereotypes people in my social circle had of ADHDers, I didn’t want to “come out” as ADHD. I wanted to take some time to prove myself – to show them that I wasn’t like the other ADHDers they knew, to show them that the diagnosis didn’t change me… to prove to myself that I was still me.

I’m really not completely sure when I decided it wasn’t worth pretending anymore. It was probably a gradual change, a gradual shift in attitude. But after a while, I just told everyone. If it came up in conversation, I said, “I have ADHD.” I blogged it in public. I decided to embrace it.

I still have anxiety attacks (though nowhere near as often as I once did).

My house is still messy (though it’s slowly getting better).

I’m still a perfectionist (that makes me good at my job as an editor).

I’m still really good at planning, organizing, and running events (hence my continuing addiction to being Municipal Liaison for NaNoWriMo).

I set timers and make constant use of electronic and paper day planners (I love Moleskine notebooks, so I have a Moleskine planner, which I write in using a pencil so I can make changes easily).

I make lists and attempt to follow them (I carry a notebook for lists, and I have an electronic to-do list on my laptop).

I tell people I have ADHD almost immediately (I’ve blogged previously about the responses I get and what I think of them).

There are definite negatives to having ADHD. Time is always going to be completely fluid for me. It’s a good thing there are alarms and timers to remind me of everything from when to turn off the oven to when I should leave for an appointment. Keeping my home tidy is always going to be a struggle for me. I am often easily distracted, so things don’t always get put away like they ought. Impulse control is always going to be difficult for me. I’m glad I am able to simply avoid some of the things that I always want to spend money on (e.g., stationery). Executive dysfunction is always going to plague my very existence. Having an electronic to-do list that self-generates every day is great and definitely helps to a degree, but there are still a lot of days when I’m doing well to accomplish one or two tasks off that list.

Bu there are also a lot of good things about my life. Whether these things are due to ADHD, I can’t really say, as I have no idea what I would be like without ADHD. I have a wonderful husband who supports me in my efforts to improve our home and to improve myself (including going to grad school). I have a number of excellent friends who share my passion for writing and other creative pursuits, others who share my passion for disability rights, and still others who share my passion for all things spiritual (particularly Christian).  I currently work when I want to, and am free to schedule my days as I see fit (thanks to e-mail and a contract with my former employer). I am slowly finishing my unfinished stories (the plague of the ADHD writer – you don’t even want to know how many unfinished projects I have in my list… or how many unstarted story ideas are in said list).

There is definitely stigma attached to ADHD. When we hear the word, the label, we immediately think of irresponsible, disorganized people. I was definitely a responsible and outwardly organized person, yet I fit the diagnostic criteria. But the stigma of the label made me afraid to tell anyone but my nearest and dearest about it for the first six months to a year.

I think it’s important for those of us who “name-drop” our ADHD diagnoses to recognize that not everyone sees their ADHD as an inherent part of who they are. Some people are in denial. Some people simply hate the hard stuff and can’t see any good stuff. I’m not one of those people who will say that I’m not disabled – trust me, I very definitely am; the only reason I am as successful as I am in my life is that I have learned to work with my strengths and around my weaknesses… and I’m learning to accept my imperfection.

Three bloggers whom I read regularly made posts today that look at stigma and disabilities. I want to link you to them.

1. ADHD Stigma: The New Four-Letter Word (Douglas Cootey). I would say that Douglas is much better than I am at writing coherent blog posts, so definitely read this. The situation he discusses in his post is kind of what sparked mine.
2. An Ode To Peter Parker (Dave Hingsburger). Dave’s posts are always incredibly insightful. This one is about how non-disabled people always seem to want to be unique, while people with disabilities often just want to live a normal life. (I know I have often wished I were normal – especially pre-diagnosis!)
3. A Single Mom’s View of Autism, Divorce Rates and Stigma in the Pursuit of Love (Estee Klar). Estee is a talented writer, a great speaker, and a pretty good mother. This post makes a few really salient points about where the blame for the dissolution of a marriage properly belongs. (Hint: it’s not on the disability of a family member, nor on the disabled family member.)

So, comment here and/or go check out these three posts. Let’s talk about stigma. The more we discuss it, the less it will influence our lives.

And hopefully someday, people won’t have to worry about others’ reactions to their diagnostic labels.

This just in: Lots of posts this week about stigma. I’ll keep adding to the list below as I find more.

1. Arbitrary Normality (Dr Rob). I just discovered Dr Rob; he is a physician who has an ADHD diagnosis and a blogger I will have to read more of (I’ll be adding this blog to my RSS feed). This post is about how his perception of autistic children has changed over the years, and includes the point that autistic children grow and mature over time, just like non-autistic children do. Fancy that!
2. What do people do when they learn your child has special needs? (Emily). I read Emily’s blog regularly and enjoy many of her posts. Her posts are always interesting. This one is about how people respond to parents of children with disabilities. Be sure to read the comments for some great discussion of what a good response actually is.
3. Fresh: No One Was Paid For This Blog (Dave Hingsburger). I just read this (Dave’s latest post) and was thrilled to see a post about what is possible when the stigma of disability is set aside and people simply work together to achieve equality for everyone, regardless of disability or ability. Check out this post: you’ll be glad you did.
4. Invisible Visible; Visible Invisible (Savannah Nicole Logsdon). I have Savannah’s blog in my RSS reader; if you check out this post, you’ll understand why immediately. Here, Savannah talks about “passing” – that thing we’re doing when other people can’t tell we have a disability. She ends with quite the challenge, one that I’ll have to think about in order to make it happen.

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This entry was posted on Thursday, July 29th, 2010 at 11:48 pm and is filed under ADHD, My Life. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.