medication – Josephine Moon

Many people have been commenting on and asking me about my weight loss. People in town in the shops I regularly visit. People who haven’t seen me for a while. Friends who’ve noticed things changing in the photos that I post to Instagram or Facebook. And they have a lot of questions. The funny thing is that I have been losing weight steadily for 7 years now but people have only recently begun to get whiplash when they see me.

Essentially, they want to know how I lost the weight. So, I’ve written a comprehensive answer, because it’s not been an easy question to respond to in one line while standing in the checkout queue at IGA.

For me, it’s not terribly interesting that I have shed weight; the far more interesting question is about how the extra weight got there in the first place. I think people probably have a narrow judgement about that, presuming it was from too much food, lack of exercise and a sedentary job. The more interesting answer, though, is that at no time have I consciously changed my diet (either while gaining weight or while losing it), nor have I ever embarked on a new exercise routine to lose weight. Nope, none of that.

I am someone who experienced two miserable, painful, crushing years of disordered eating and, once through it and out the other side, I have never once allowed myself to manipulate food or exercise for any specific weight-related purpose. I cannot do it. I will not do it. It’s like being a recovered addict, I guess. I simply cannot ever go back to anything that resembles food/exercise control, portion sizes, calorie counting, weigh-ins, tape measures or anything like that. For me, diet culture and weight fixation is triggering and deeply uncomfortable. I am always interested in a loved one’s health, of course, but not the perseveration over ‘weight’.

Okay, back to me. What has actually happened? (You can scroll to the bottom for the TLDR section if you don’t like details.)

Well, this goes back a long way (more than thirty years), back to when I was fifteen. That was the year my autoimmune disease began. It’s called ankylosing spondylitis. Like all autoimmune conditions, it’s rather nasty. Its aim is to “remodel” my spine, which means: damage it, break it down, inflame it, fuse it where it shouldn’t be fused, grow bits where there shouldn’t be bits, cause terrible sciatica, fuse the sacroiliac joints… and for kicks and giggles it expands its territory to include other joints and soft tissues as well. Because medical ‘experts’ used to believe that women didn’t get ankylosing spondylitis (gosh… that gender prejudice is an exhausting and repetitive tale of medical woe), I was dismissed. I was gaslighted by doctors for years, told I must simply be depressed, signed up for thousands of dollars of ‘essential wellness’ tools, or told by new age healers that I had chosen this for myself and only I could make the choice to be well.

Sigh…

Then, at forty years of age, a good (female) GP referred me to a different (female) rheumatologist who quickly realised what was going on. Scans were ordered and by now, the damage to my spine from a quarter of a century of this rampantly unchecked autoimmune disease was so irrefutable that I finally received a correct diagnosis and, importantly, the correct medication.

You see, because I had never been diagnosed correctly, over the decades, I had been given all manner of pain modulating medication which, you guessed it, made me put on loads of weight. One of those medications took me four months to wean myself from due to the horrendous withdrawal side effects. It was a nightmare.

Now, The Too-Long-Don’t-Read (TLDR) Summary of My 30kg Weight Loss Story

I had a serious auto-immune condition that started when I was 15 but I was misdiagnosed for 25 years.
In those 25 years, I required more and more pain medication to control the damage that was being done to my spine and body. These medications made me put on weight, made me dopey and sleepy and messed with my brain.
At 40 years of age, I finally got the correct diagnosis and importantly the correct medication. This (practically magical) fortnightly injection does not make me put on weight and it improves my spine function and mobility so I can be naturally more active.
When I stopped taking the wrong medication, I began to lose weight, with no specific intention (because I refuse to ever again be controlled by thoughts of weight and weight loss). I lost roughly a 1kg a month consistently for over a year.
Interestingly, for a while after discovering I am neurodivergent, I lost more weight (again, at about 1kg a month) for some time. I have no explanation for this but (half) jokingly refer to it as my ‘Autistic weight loss’, perhaps the result of shedding decades of pain and shame from not knowing my true self. You never know…
Things got twisty again last year when, for several months, I lost my appetite and couldn’t look at food and felt like I had morning sickness all the time and generally just felt I couldn’t cope. I was also hysterically thirsty (I literally couldn’t sleep because I couldn’t swallow!) and exhausted and I was dropping weight. I had tests to rule out diabetes, iron deficiency and liver function, which were all normal. Both myself and and the GP put it down to the side effects from having started ADHD medication. But we were wrong.
When I saw a different GP about these symptoms (as I was worried no one was taking them seriously enough), she suggested trialling low-dose hormone therapy… and just like magic, all those symptoms went away.
I have been eating as usual now since December last year (I no longer feel sick and am not ridiculously thirsty) and my weight has been stable for months now.

That’s it in a nutshell.

You asked… I’ve answered.

Jo X

(P.S. I have deliberately not provided before and after pics because, as stated, that kind of culture makes me feel queasy and triggers parts of me I’d rather not invoke.)

I often get asked how to get an ADHD diagnosis in Australia so I put some info together here that might be helpful. Firstly, this is serious stuff. It needs attention. And you deserve help. You do not need to struggle every day, wondering how you can be so well educated and capable in some ways, and yet able to roll over in bed, pulling up the blankets, only to lose your grip and punch yourself in the face, making your lip bleed. Yes, I’m just that talented. (Just wait till you get to the bit about my car.)

Honestly, after my identification as Autistic I really didn’t think I could be taken by surprise again but then along came an ADHD diagnosis. Never in a million years would I have thought I was ADHD because, just like with Autism, we’ve all been fed a narrow stereotype of what ADHD looks look. You know, the kid (a boy) in the classroom that can’t sit still, can’t stop talking, causes trouble, gets suspended etc. But as one of my diagnosticians said to me, if you think of the cast of Winnie the Pooh, everyone can recognise Tigger as the ADHD one, yet it’s more helpful if you realise that EVERY character in Winnie the Pooh is ADHD… yes, even Eeyore.

The medical community is playing a massive game of catch up right now. For nearly a century, the narrow view of what ADHD looks like has left behind girls and women, people of colour and gender diverse individuals. This is why we are now seeing a sharp rise in ADHD (and Autism) diagnoses: there is a huge backlog of work to get through. As an aside, there is a HUGE overlap between Autism and ADHD. You might like to check out the rather fabulous Megan Neff’s posts on Instagram. She shares a ton of info that you will likely find helpful if you’re querying your neurodivergence.

I shared a post a while back on SOME of the ways ADHD was playing out in my life, without me or anyone else realising it (until my husband started saying, ‘I think you’re ADHD’, and I was like… What? No, I’m not! You are! LOL. That’s funny because he is ADHD. He got his diagnosis first and after many months of getting treatment and learning about it he was able to recognise it in me. (And I am SO grateful.) But as is so common, he presents in a very classic (i.e. stereotypical) ADHD way: he talks fast and all the time, he has energy to burn, he loses his keys almost every day, he cannot sit still… etc. As for me, I wasn’t so obvious. However, after my hubby started telling me that fatigue could well be my signature feature of ADHD, I sat up and listened. Fatigue?! Isn’t that the opposite of what ADHD looks like? And there’s the problem. The stereotypes of Tigger have left everyone else behind, especially those of us who might look like more like Eeyore.

ADHD can look very different on different people. The way it looks on me is very different to my husband and could be very different on you too. It’s tricky!

Okay, so you’re thinking you might be ADHD. What do you do? Here are some things to know.

You’re going to need to get a referral from your GP to a psychiatrist. Psychiatrists are the only ones authorised to issue ADHD medication to adults in the first instance. (NB: this might differ from state so check out your state’s regulations.) After a certain amount of time, they can hand over to your GP but there is loads of red tape and paperwork. ADHD medications are S8 medications: highly, highly restricted, monitored and controlled. (No one wants to see them on the black market.) You’ll also have to do a drug screen and other preliminary health screens.
You might prefer to get a referral to an ADHD diagnostic psychologist. There are pros and cons to this. I went straight to a psychiatrist but I think if you went with a psychologist they would be able to spend a lot more time with you talking it through and coaching you on how to understand ADHD and manage it. I think my psychiatrist is wonderful but they definitely don’t have as much time as psychologists do. You might also choose this path first if you are unable or unwilling to take medication. But if you do want the medication, your psychologist will likely have to hand you over to a psychiatrist anyway.
There are long waitlists for ADHD psychiatrists (I was on a waitlist for about seven months and I’ve heard reports of up to two years) and the assessments are expensive. You can ask to go through the public system but the wait times will vary and of course you will need to have access to the hospital (which is pretty tricky if you live in remote areas). Sadly, many people who want and need a diagnosis are unable to get it and the resultant medication and help they need because they cannot afford the fees or don’t have access to the specialists.
You won’t just see the psychiatrist once or twice. They are the specialists in brain medication and they are going to want to monitor you for a long time to make sure you’re on the right type and dose. (That’s a good thing.) My husband had a pretty straight forward experience with medication (he tried it, it worked, happy days) but my journey has been more turbulent. When my meds are in balance, I simply cannot believe I’ve managed to live this long without them, and I can’t believe this is what other (non-ADHD) people feel like all the time. (Lucky ducks!) But I am still working through it all to find the perfect combination of treatment. Sometimes, that can be rough. For some people, it just takes longer to get the right balance.

My Tips for an ADHD Diagnosis Pathway

Because those of us who don’t look ‘typically ADHD’ probably don’t know what ADHD looks like outside of the stereotypical, we might not know how to respond during assessments. (I did ZERO prior reading or research and turned up completely ‘cold’. I don’t think that’s a good strategy.) Prior to my diagnosis, if you had asked me ‘Are you impulsive?’ I would have said no because in my head impulsivity looked like shoplifting, or eating a whole cheesecake (okay, there might have been shades of that in there), or the boys who fling things around in the classroom, or who jump off a bridge into the river below without first checking for hazards. But then my diagnostician asked me if I’d ever impulsively gotten a tattoo … and I burst out laughing. Also, there is a long history of starting jobs, quitting jobs, starting businesses, dropping businesses, burning bridges … and literally every animal in our home was an impulse decision on the spot with no prior thought.

Another example of this misalignment between the ADHD assessment questions and my lived experience was about hyperactivity. Did I relate to hyperactivity? I would have said no. But then, I didn’t realise that hyperactivity doesn’t always look like that kid in the classroom who can’t sit still or be quiet. Hyperactivity can be internalised. That can mean: the mind that won’t stop racing, the endless rumination and rehashing of conversations past, the constant second guessing, the lifelong teeth grinding, the fact that I can’t sit through a whole movie, or that there is always some part of me that is twitching, or the lifelong insomnia. (Please, GPs… I have asked for help for lifelong sleep disorders more times than I can count (sleep disorders since a kid in primary school) and no one ever thought to think, hm… maybe this is something else… rather than telling me to try some chamomile tea, do some progressive muscle relaxation and hand me some medication). Anyway… if you are struggling with the assessment questions, I encourage you to ask for help to understand.
A really important tip! I am paraphrasing Glennon Doyle here (because I can’t find the exact quote online). She gives this very sage advice: When you make an appointment with your psychiatrist it’s usually because you know you need help. So you make the appointment and then you have to wait. And during that time you feel better again, so when you get to the appointment and they ask you how you are, you say, all good, thanks! What we need to do it WRITE DOWN how we feel and TAKE THE NOTES to the appointment. In the two weeks prior to my ADHD assessment, I simply wrote down everything I was struggling with. As in, specifically that things that caused me woe each day. (Like, I got out of the car one day, on a hill, and FORGOT to put the car in Park and didn’t put the brake on… and so the car rolled backwards down the hill and nearly over the edge of the mountain, and was only saved by one brave gumtree that stopped it. I’m not even kidding. (Like, HOW can you drive a car for almost 30 years and forget to do this?!?! Um, ADHD, as it turns out.) I had no idea if what I wrote down had anything to do with ADHD but I thought, hey, I’m seeing a psychiatrist, at the very least it would be great to chat about this and see what else it could be. I am so glad I wrote it all down. I saw two assessors and as soon as I started reading out some of the things on my list, the first one was nodding with understanding and could explain exactly why that was happening (as in, literally what was happening in my brain) and IT WAS ADHD. So, Glennon Doyle, if you ever stumble on this post, THANK YOU. I would never had remembered what had been a struggle for me without your advice. (Also, I love you and your books. Please keep writing forever.)
Lastly, if you go and see your GP and ask about ADHD and they dismiss you on the spot because you ‘don’t seem ADHD’ or because ‘you have a job and a family’ or ‘you managed to get here on time with clean clothes’, please get up, walk out that door and FIND ANOTHER doctor. Okay? Far too many doctors dismiss people on the spot for arbitrary reasons. Talking to you for 10 minutes IS NOT AN ASSESSMENT. That is an opinion and possibly an ill-informed, outdated one. (Please note, I have some fabulous GPs. There are good ones out there.)

Okay, I hope this post has been helpful. For me, my advice is that if you think you might be ADHD, do not ignore that. (Did you read the bit about my car?!) It could save your life. I know it’s a long process: it’s worth it. I know it’s expensive (but so are panel beaters).

Jo x