An important statistic I learned recently: about 30% of all healthcare is wasteful and fails to produce a helpful outcome, while a whopping 10% of all healthcare produces an actively harmful outcome. So, what can we do about it?

Anecdotally, this seems to be even worse for mental health outcomes. Knowing that stat, we still need to work with the system we have. We need to play an active role in our own health and form deep partnerships with our healthcare providers.

Note: This article may be more controversial than my other content so far, but it's a topic I'm passionate about. My goal here is not to focus too heavily on the issues with the health system, but to empower people to better work with the system for their own health.

Victoria's road to an ADHD diagnosis

Note: I obtained permission before sharing this story.

Victoria (my partner) and I both have ADHD, but have very different diagnosis journeys. I was diagnosed around 4 years old, long before I transitioned. The fact that I was presenting male likely played a big part in getting diagnosed easily. The focus, especially back in the early 90s, was entirely on the "male" presentation of the disorder.

Victoria showed signs of autism and ADHD from a very young age, but was never diagnosed in childhood. She struggled with severe mental health issues through high school and university, despite receiving treatment for anxiety and depression. Eventually she suspected something else might be wrong.

Provider 1

She'd heard about ADHD and asked her provider about it, but the doctor dismissed her concerns and quite condescendingly told her that "it was normal for her age" and that she just needed a calendar and more discipline. Initially, Victoria accepted this, trusting the doctors judgement.

This experience left a long-term impact on her self-esteem, believing that she just needed to try harder. In fact, Victoria has a tendency to repeatedly over-work and burn herself out.

Provider 2

When we first met, I recognised her struggle and saw signs of ADHD, and encouraged her to seek a second opinion. It took a while to convince her, especially as the other people in her life at the time thought it was wrong to "doctor hop" in search of a "specific" outcome.

To my disappointment, this second doctor once more misconstrued or ignored her concerns. He had decided that her tuning out during conversations was "dissociation", which can appear similar from the outside, but the difference depends entirely on the patient's own internal experience (information which only requires basic listening skills to obtain). In Victoria's own words: "gee, if they thought I was dissociating every time I zoned out, no wonder they wanted to put me on hardcore mood stabilisers and anti-psychotics".

This doctor would rather have placed her on a cocktail of inappropriate drugs than listen to her and even consider the possibility that ADHD was at play. The irony here is that he also accused her of seeking drugs! It's worth also mentioning that the doctor stated that "even if you have ADHD, we need to get your anxiety under control first" (ignoring the fact she was already receiving treatment for this and totally neglecting the fact that untreated ADHD can cause anxiety!). By digging deeper, you can often find a root cause tying multiple symptoms together, and achieve a far better outcome with less medication and treatment.

Provider 3

Victoria went home from that appointment in tears, frustrated and defeated. It took a while before I was able to convince her to try one more time, with my own doctor. This doctor was far more knowledgeable about neurodivergence and was far better at listening and providing wholistic care. He helped Victoria receive the correct ADHD treatment as quickly as possible, and surprised us with a second diagnosis - autism!

It's quite obvious in retrospect, but it took Victoria getting diagnosed for us to both learn what autism can look like. As a result, we were able to spot when a friend was struggling with undiagnosed autism, and encouraged them to get diagnosed as well.

The importance of diagnosis

Psychiatrists are quick to deny treatment, especially when it comes to ADHD, accusing patients of drug-seeking behaviour. But medication isn't even the biggest benefit of diagnosis. I really need to stress how crucial it is to simply know and understand yourself and your own issues.

Victoria says - "In the context of a disorder like ADHD, your life is a constant internal battle, always fighting your own mind to work harder yet somehow always feeling like you're one step behind. Looking at your peers and the ease with which they seem to do things that are such a struggle for you, it's only logical to conclude that the reason you struggle and they don't is because they are simply better than you.

"A diagnosis means your struggles aren't just a personal character flaw like you've believed your whole life - they're real, and they're not your fault. Knowing this gives such an indescribable feeling of reassurance and hope. It's the start of a journey transforming how you think about yourself as a person, treating yourself with greater compassion, and ultimately, beginning to heal the damage from a lifetime of feeling like you weren't good enough."

Diagnosis is of enormous importance for invisible conditions like ADHD, autism and even invisible physical conditions like Ehlers-Danlos Syndrome (EDS) or Chronic Fatigue Syndrome (CFS). But for any health condition, a diagnosis means answers.

How to advocate for your own health

Form partnerships with your providers

Be selective about who your trust with your health. As much as possible, find providers with a good reputation, sit down with them for an appointment, then take note of whether they listen and respond to your concerns, and generally whether the conversation flows easily. This starts with your GP. This is the most important place to "shop around" initially, because once you find the right one you're going to stick with them for a long time. In my case though, I chose a specific clinic rather than a specific GP there, because the clinic had a brilliant reputation and specialised in working with transgender and neurodivergent healthcare.

Reach out

It can be so helpful to find other people with similar experiences. Medical language can be hard to interpret, so sometimes it's hard to know what symptoms are relevant. On the other hand, you can sometimes reach a better understanding by hearing lived-experiences, especially from multiple different perspectives as presentations of the same disorder can differ drastically. Communities can also be a source of validation and safety, as well as a fantastic place to learn new ways to manage your condition at home.

Understand your own body

I hate that there are so many bad patients out there that this has become a negative stereotype, but seriously - do your research! There is always a line to be drawn, where "Doctor Google" helps you make the wrong decisions. But it always helps to know just enough about your condition to know things like which symptoms are more important and when your doctor is overlooking key information. If you've done the previous step and found a doctor that is really your health partner, this can lead to a productive back-and-forth. If either one of you is doing most of the talking - either a doctor who won't listen to their patient, or a patient who knows everything - in both cases it will lead to poor results.

Trust your instincts

In the end, you are always the person who knows your body best. It can be difficult, but you need to trust your own instincts and the signals that your body is sending you. Your health is the most important part of your life, and you're the best person to fight for it!