Seeking a Mental Health DiagnosisPosted: 7 Nov 2023
Seeking a diagnosis for your mental health can be a daunting, relieving, or even exciting concept for many. We spoke to our community about what it feels like to get a diagnosis, the steps to getting there, and what they would suggest to others looking to walk the same path.
Depending on where you are in the world, the path to diagnosis can vary greatly, and present new barriers that others might not face. Diagnosis (or misdiagnosis in some cases) can also look different for many folks when considering things like age, gender, ethnicity, economical status, disability etc. – it’s important to recognise that different conditions will present differently in different people, and no one experience will be representative of everyone’s.
Content Warning: non-graphic mentions of substance abuse, abusive relationships, PTSD, sexual assault/rape, anxiety and depression
Challenges in receiving a diagnosis
When we asked our community on their biggest challenges in seeking diagnosis, there were definitely a variety of responses but also common themes. Aradhalia commented “For me the biggest challenge in seeking a diagnosis was a combination of the lack of accessibility for young children to be seen/heard regarding mental health and the cost (both of the treatments/diagnosis and insurance to get me there).
I remember being 8 years old and trying to express to my mother how I felt I needed to see a therapist because I understood that how I felt wasn’t ‘normal’. Between that conversation, behavioral issues at school, and and problems making/keeping friends, its clear to me now that I definitely should have appeared to be a troubled child that needed some help from other adults at the time. However that did not wind up happening. I had to wait until I was 22 years old before I could afford to see someone and get diagnosed/treated.
Zelden shares her experiences as well, explaining that her biggest challenge was “accepting that my issues were not physical problems but actual mental health concerns. I’ve heard of doctors explaining away symptoms as “anxiety” or “stress” before and was scared that the chest pains and breathlessness I was experiencing were being written off. When seeking my first diagnosis I wasn’t willing to accept that maybe there were outside factors (the aftermath of an abusive relationship) contributing to my sudden change in health.
“When I was finally ready to seek out a real diagnosis, my challenge became finding my voice to tell my therapist that I needed more help and I didn’t think she could give it to me. I had to gain confidence in my decision to ask her for a referral to a specialist when I felt our sessions weren’t working. Her methods were helpful for generalized anxiety but I knew in my heart I was experiencing PTSD and I needed more. Thankfully I was lucky. When I told my therapist this she replied, ‘I know someone next door who can help you.'”
EJKoala had an earlier diagnosis of depression and anxiety when she was 14. “It wasn’t until I turned 21 that I noticed something still wasn’t right. I was raped multiple times by my ex around 2019/2020, and after I experienced that, I spiralled. I had flashbacks, nightmares, the whole 9 yards, and I tried to reach out for help but no one was listening.”
I put myself on the waiting list for therapy and I finally got an appointment, the first session my therapist said to me ‘You have PTSD, this is the wrong therapy for you, let me do a screening test for you’.
“I was in denial, I knew I had it but I was scared of getting the diagnosis itself. We did the screening and she just looked at me with the saddest eyes and said ‘You’ve scored the maximum on the PTSD screening, you need help.’ My heart dropped, someone finally heard me. Someone finally said the words, you have PTSD and it wasn’t all in my head.
A few years after I had a complete mental breakdown, something else was missing – this wasn’t a complete jigsaw piece. I called the local mental health team and expressed I was in a crisis. I attended a physical appointment not long after and once they assessed me, they told me that I had Borderline Personal Disorder, and I most likely had it all my life, but they couldn’t diagnose me until I turned 21. Something clicked and everything fell into place. I had all the diagnosis’ and they all made sense. It took from age 14 to 21 to get diagnoses with anxiety, depression, PTSD and Borderline Personality disorder.”
Zoe discusses how her biggest challenge in seeking a mental health diagnosis was feeling like her doctors were taking her seriously. “I already have a difficult time with speaking to doctors due to my chronic pain & past experiences, which was making me second guess if I actually wanted to try to get a diagnosis. I’m very happy that I did eventually take that first step though; it was validating.”
Another challenge mentioned was from Sarah, explaining the struggle of professionals not understanding the extent of their mental illness. “It took ten years from the first time I went to the GP for a mental health issue until this year when I’ve finally been able to access appropriate treatment for the first time.”
“My mental health issues have existed since I was a child and with no support for most of my life I got very good at hiding and masking my mental health issues. This sometimes means that healthcare professionals don’t ‘see’ the severity of my mental illness because I come across as calm when I talk about it (dissociating) and because I appear to be “high functioning” in my daily life by holding down a job, having friends, and so on.”
How did receiving a diagnosis feel?
“Honestly? It freed me.” EJKoala explains, “I spent years being scared of myself thinking ‘who am I?’, ‘what’s happening to me?’. I was confused and it caused me to spend my teenage years in complete isolation, jumping from relationship to relationship to fill some kind of void of not knowing who I was. I lost years of my life to being a complete shell and not knowing who I was and what was happening to me and why. When I finally got all my diagnoses I started to process my feelings, I started to understand why I felt the way I did and that it wasn’t all in my head.”
Sarah talks about their lack of official diagnosis, “I don’t have an official diagnosis but I do finally have acknowledgement on my medical record that my mental health issues are more long term than ‘anxiety and depression’ and I’m finally able to access appropriate treatment, which is honestly amazing.
I feel relatively safe for the first time in a while, I feel like managing or recovery is possible and sometimes I feel like I could have a future.”
However, it’s important to address the difficulties that can follow diagnosis of more stigmatised mental illnesses, as Sarah explains here: “I’ve tried to find resources to help me explain my problems to others and all I’ve been able to find are articles that talk about how people with this condition are really difficult to work with, are bad friends, are bad partners, are generally difficult to be around, and it’s painful. I keep accidentally stumbling across hate for people with my condition when I’m looking for support.”
Aradhalia shares some of that experience, “I wasn’t surprised at my diagnosis’, but I wasn’t thrilled either. There’s a stigma against quite a few of the labels the doctors gave me, however knowing exactly how my brain was working and knowing there was a way to get it reigned in was incredibly liberating.”
Zoe commented on having a mixed response to getting a diagnosis as well, with it being both upsetting and a relief. “I am someone who thrives on knowing what “why” something is happening, and so getting that “why” with my diagnosis gave me a good starting point to work with so that I could start effectively taking care of my mental health. However, getting my diagnosis did make me feel “labeled” as someone with mental health issues. This scared me because I was afraid of being treated negatively by others just because of how my brain is wired.”
Relief was a common theme here, with Zelden comparing the moment of getting a diagnosis to ” unmasking a villain in Scooby-Doo”. She continues, “it became tangible and suddenly I could do something about it. It started with learning about PTSD and then grew into learning about ADHD and I was able to start tracing back events in my life that made me feel so alienated from everyone else and say, ‘this makes more sense now.'”
Paving a path forward
Sharing our experiences and supporting others in their own journeys is fundamental to us continuing to learn and grow together. We asked our contributors to offer some advice to those looking to start their own journey:
Trust that there will be a day when you can get the answers you need. It may not be tomorrow, or next week, but it will happen. – Aradhalia
Fight, fight like hell. Please never get up seeking that diagnosis, if you know in your heart that something isn’t right and you need help, reach out. Get that diagnosis so you can start to heal and proceed on getting better whether that be with medication or therapy. Everyone deserves to be heard, you’ve got this. – EJKoala
Do not be afraid to get a second opinion. You do not have to settle for the first therapist you meet as they may not be the person who can help you. – Zelden
Don’t give up! You’ll probably need to learn to advocate for yourself and also do a lot of research so you can communicate your symptoms and problems well and concisely, and so you have an idea of what kinds of treatments might work for you… You don’t necessarily need a diagnosis if you can find a route to support that works for you. – Sarah
Sometimes that first step is the hardest step to take, but it is absolutely worth taking. Battling the unknown is difficult enough, and having a starting point for taking care of your mental health can help make things just a little bit easier. – Zoe
If you’re looking to do more research on mental health conditions, check out our A-Z on symptoms and conditions here.
If you’re looking for support, please visit our Global Helplines here.