by Katherine Reed

Have you ever noticed the privilege we have as wheelchair users? I know that sounds like a strange thing to say, but hear me out. People see our wheelchairs. They don’t expect us to be able to climb a set of stairs (and they get freaked out by those of us who can still stand/walk).

Have you ever considered what it is like for those with invisible disabilities? Anxiety? Neurodivergence? Chronic illness or pain? (I always feel so grateful I don’t have to deal with chronic pain, that must be so exhausting!) I do, however, have ADHD and that has had a huge impact on my life, especially over the past 5 years.  

I’m married to Tim and mother to two boys, Will (8) and Harry (5). In 2015 Tim had married this fierce, motivated, energetic go-getter. Five years later, when Harry was almost one, she had just completely disappeared, and I was in survival mode. I preach put on your oxygen mask before helping others, but not only was I not putting mine on, I had lost it all together. 

My self-care was at an all-time low. I was managing to still feed everyone, pick up Will from school etc, but I couldn’t see the mess in the house around me because I just couldn’t deal with it. And outside just didn’t exist.

If it wasn’t for the cleaner I got funded by the NDIS, I don’t know what sort of state my house would have been in. I was barely showering, (as in maybe once a week), because it was just too hard. I think the only reason I was really functioning at all was because I had the kids to look after. 

It was this bizarre juxtaposition where I was so damn bored from the monotony of the everyday mundane crap of being a stay-at-home mum, yet it was my kids that kept me from losing it completely; the fact they needed me to look after them kept me getting out of bed and moving on. I was escaping into my phone every second I could; fantasy novels especially became the place I went to get away from the monotony of the every-day. My brain needs stimulation, and it just wasn’t getting any.

I literally forgot I had friends; I didn’t even remember that those people existed. I had contact with about three people outside of my family. I had started on antidepressants, and they had helped a bit, but they didn’t really seem to be doing what I had hoped. I couldn’t pull myself out of it this time. 

I have been in this space before. I used to call it ‘being in a rut’ before I understood it was actually depression (it turns out depression doesn’t always present in an inability to stop crying). I’d always been able to get myself out, usually in two weeks to two months. But this had been going on for two years by this stage, and I wasn’t getting any better. 

I’d also developed migraines at this point, bad enough that I was on medication for them for several years. I was never in any danger of self-harm, I was just completely numb. A constant, exhausted state of nothingness. 

Several years later, I understand that I was likely in a state of burnout, one that needs a lot of rest and self-compassion, then a big change of pace to bring me back to myself. (I still get burnout, but I can catch it much easier and can usually manage it with a slow, quiet week and lots of naps). 

A couple of years ago, Em Rusciano (comedic genius, podcaster, writer), a woman I have resonated with greatly since I began following her work, was diagnosed with ADHD. 

As she shared her ‘journey’, her symptoms, the effect it had on her life – it became too much of a coincidence. It wasn’t so much a subtle hint as a flashing neon sign with sirens blaring. I started to do some research. 

After one particularly jarring article, I emailed my mum and asked her if she had ever considered that maybe she or I might have ADHD. (This article had particularly screamed ‘MUM!!!’ at me). Her reply? ‘Why would I have ADHD? I just have all the symptoms’. 

It was then I knew I wasn’t just reading into things, that I would have her support in this. Together, we talked a lot over the next few months. 

I am lucky enough that the psychologist I have been seeing over the past four years is also a woman with an adult ADHD diagnosis. She has been an invaluable resource when it has come to helping me through this minefield. She helped me find a good psychiatrist (apparently a lot of psychiatrists in Tasmania don’t believe in adult women having ADHD) and by the middle of 2022, I had my diagnosis: ADHD inattentive.

All of a sudden, so much about my life makes sense. We had been looking back over my life, at where my depression started – all these early episodes were linked to events that are highly problematic for girls with inattentive ADHD: starting mainstream schooling, hitting and then going through puberty. My issues around homework (unsupervised work), relationships (all in for about 18 months then essentially bored over-night – those poor guys I dated!), adrenaline seeking behaviour (Rodeos, horse racing, driving everything to the limit), poor time management, high sex drive and so, so much more.  

It’s a funny thing getting an ADHD diagnosis. For those of us who get the diagnosis, it can be EVERYTHING. It’s all we want to talk about. So much makes sense. It’s like rediscovering yourself. 

I was doing an interview with Paraquad Tas and during the conversation we were talking about how not everyone with a disability is comfortable divulging personal medical information with strangers on the street, who seem to think they are entitled to just ask whatever questions they wish, yet I’m always comfortable to educate (so long as the person is polite to me). And lightbulb moment! ADHD often causes us to overshare and over-explain things! Ah, that is my ADHD talking!

It’s not really like that for our families though, well not the neurotypical members anyway. It turns out they can get bored of it pretty quick. To them it feels like we are making excuses. To us, we are making sense of ourselves. We are relearning how we work. So much of what we thought we knew about ourselves has been wrong. 

And if, like me, a diagnosis has come about because of a crisis (like you’ve lost control of your life and you’re no longer functioning), well you need to learn how to put that back together, while learning how to use a new management system, new coping strategies, healthier patterns.  

When I started medication, I came back to life. It was like coming out of a boggy swamp, covered in pea soup, out into dry land and clear blue skies. I remembered I had friends and I wanted to talk to them! I’m not exaggerating when I say medication for ADHD saved my marriage and me. Tim says he wasn’t going anywhere, but I don’t know how long he could have lasted before he was completely burnt out too. When we say in sickness or in health, I mean, this isn’t exactly what we expect by the sickness bit is it? 

And my poor husband. I have always resisted the ‘hero for marrying me’ trope, because I hate how people see any guy who is with a woman with any kind of physical imperfection (i.e. a wheelchair) as oh so wonderful for simply being there! But he has just about earnt it these past few years, I think. 

Not because of my physical disability, or because of my ADHD, but because it has been a hell of a shit storm riding all this out together! And of course, I had no idea while I was in said shit storm, just how bad I was (wait a sec, I think I was the shit storm in this analogy…) 

He was trying to tell me how much he was doing, struggling, how little I was doing, and I would just get defensive (because I felt guilty for how little I was achieving, because I felt I had no purpose or direction) and I was not capable of listening to him. I also hate him describing himself as my carer. It makes me feel useless, it takes away my independence. But looking back, I can see why he has felt like my carer over that time; he really was the one holding our family together. 

I was so lucky to have had my psychologist on board; she had prepared me for the ups and downs going ahead, warned me to be aware of burn out, to really just try to focus on sleep, hydration and eating regularly and well for the first few months. And without that, I think I would have found it a really rough transition. 

I’ve had a LOT of slip ups, especially as I’ve recently returned to work part time. My phone was a huge issue for a long time. Due to my improved ability to focus (because of the medication), my phone addiction actually got a lot worse before it got better. For a while there I was sitting up reading until all hours of the morning. 

An alarm clock beside my bed and the phone staying in the kitchen overnight has fixed that, but it took a while. (Ok fine, I still slip up occasionally when I’m listening to a really good book). 

One thing I’ve learnt about myself is that I need extra time to process things in conversation; partially because I think in picture and not everyone does that! My mind pictures moving the cows from paddock A to B much more literally and step by step, than Tim’s does. He also has to draw me a lot of pictures. So, our communication is getting a lot better, even if it does have a long way to go and I can’t really process anything once my meds wear off at about 8pm.

I came across this diagnosis at a time that I’m grateful for it. It would have been nice not to have had to suffer (and torture my family and friends) for all those years, but as ADHD is highly hereditary, it does mean that I know early enough to keep an eye on the boys and any symptoms they may have. 

Regardless of whether they were to be medicated, if they did have ADHD, an early diagnosis would provide them additional help at school, and provide us all with a better understanding of how their brains work, so we can help teach them appropriate ways to work with their brains. So, I’m grateful for the heads up there.

One of the reasons I want to share this story with the SCI community, is that I think we probably have a lot of ADHD brains between us. When we consider the tendencies of those with ADHD to be impulsive, to have little regard for the consequences at times, our risk-taking behaviours, I don’t see how we couldn’t be overrepresented in traumatic injuries! 

So much of society’s understanding of how ADHD presents is based on the naughty little boy who cannot sit still, but this is highly inaccurate, especially for girls and women. I would love to see information on ADHD and its different presentations available to patients in Talbot and other rehabilitation centres in the future – maybe we can help some of these undiagnosed cases find some help earlier, before they fall into a depressed, burnt out mess.