Misdiagnosis: The journey to understanding yourself

Reaching out for support with your mental health takes a lot of courage in the first place, but what happens when getting the right diagnosis isn’t straightforward?

Misdiagnosis: The journey to
understanding yourself

Lizzy Adas’s story begins in 2008, when she was 22 years old. She was working as a manager for a pub chain, and recalls how she would go from feeling great, breezing through work, to suddenly hitting a brick wall, and spiralling into a whirlwind of depression.

That was the start of what would become a 13-year journey to a diagnosis of bipolar disorder; a path that was paved with dead ends and false turns.

“At first I tried to ignore it, and hoped it would go away, but I started to go into myself so I went to my GP,” Lizzy says. “They tested my thyroid – all OK – and said I could have counselling or medication. I was always scared of counselling, as it meant speaking about the abuse I had as a child, and so I opted for meds.”

She was being treated for anxiety and depression but, instead of getting better, Lizzy’s mood cycles got worse each passing year.

“I tried everything I could think of – changed my contraceptive pill, did blood tests, exercised, everything. But it just got worse and I had no idea why.”

In 2016, Lizzy gave birth to her twins, and shortly after was diagnosed with postnatal depression (PND) – the only diagnosis that, so far, felt right for her. But things still didn’t improve, and in 2017 she began attending counselling after feeling suicidal.

I felt lost, like if they couldn’t help me then who could? Maybe it was in my head, maybe I was causing it?” Lizzy says. “In April 2019, I had a severe breakdown and self-harmed – I wanted the pain to go away. I was destroyed. So I went to my GP again, I remember just shouting, ‘Help me! If you don’t, my children won’t have a mother much longer.’ I asked, why am I happy and then so sad? Why do I feel like this is killing me, literally?

“He said it sounded as though I had bipolar, and that having children meant the onset of bipolar had worsened. I finally got sent to the mental health team.”

In January 2021, Lizzy was diagnosed with bipolar. But her story, sadly, isn’t unique. Mental health misdiagnoses are not uncommon, and bipolar is one most commonly misdiagnosed; according to Bipolar UK, it takes an average of nine years to get a correct diagnosis and, during that time, patients will be misdiagnosed on average 3.5 times.

Psychotherapist Jeremy Sachs says: “Mental health misdiagnosis does happen. In the sexual trauma recovery groups I run, I’ve met people who lived with misdiagnosis for most of their lives – PTSD mistaken for autism, psychosis mistaken for borderline personality disorder.” One cause Jeremy outlines is that symptoms may overlap into different conditions, and it’s also possible to have more than one mental health condition, which raises the chances of it being missed or mistaken.

“This isn’t just healthcare professionals missing or misunderstanding symptoms,” Jeremy explains. “The pathologising of minority groups can lead to misdiagnosis or mistreatment. For example, it is common among the transgender community, when seeking support for transitioning, to have challenges with healthcare professionals misdiagnosing their feelings or experiences.”

Beyond that, Jeremy points to the fact that three quarters of mental health conditions begin before a person reaches their 20s – something that can leave you feeling ‘different’, and isolated from your peers, sometimes just written off as ‘teenage angst’. And facing a misdiagnosis can come with a sense of fatigue.

“Rallying the courage to approach a healthcare professional (normally, this starts with a GP) to confirm this term or an informal mental health diagnosis can take enormous energy,” he explains. “It can be devastating if that diagnosis doesn’t fit your experience. It could feel like someone has robbed you of how you see yourself and how you function in the world. They may offer a different diagnosis that can feel alien to how you feel and perceive yourself. And a person can feel like they are to blame for a lack of progress in their treatment.”

Feelings like those Jeremy highlights are natural, and can take time to process – they echo Lizzy’s early experiences. However, her final diagnosis came with a huge sense of relief at finally having an answer.

“To me, it wouldn’t have mattered what the diagnosis was, as long as it was the right one and I could finally get help,” she says.

There’s no hiding the fact that a mental health misdiagnosis, and the long road to getting clear answers, is often accompanied by a host of additional wellbeing challenges. A final diagnosis can open the door to greater self-understanding, but it can also come with mixed-feelings. Wherever you are – or someone you care about is – on that journey, as we continue the conversation on mental health, and support investment and research into resources and care, there are lessons on the horizon. And that’s something we can all be a part of.

Misdiagnosis: The journey to
understanding yourself

Your options

Jeremy Sachs explains your options when facing a misdiagnosis:
If you disagree with a diagnosis, you have a right to ask your doctor to explain their decision-making. If you are still unhappy, you can ask for a second opinion. However, this is not a right, and could be refused. If you feel stuck with a diagnosis, and your doctor isn’t providing any additional support or pathways to alternative consultations, here are some things you could consider:

Make a complaint

It is written in the NHS constitution that patients have the right to complain about any aspect of NHS care, treatment, or service. Speak to your healthcare service manager or reception staff to find out how to register a complaint.

Appealing the use of the Mental Health Act 1983

If you are complaining on behalf of someone detained against their consent under the Mental Health Act, put under guardianship or community treatment order, you can go to the Care Quality Commission (cqc.org.uk/contact-us/how-complain/complain-about-use-mental-health-act)If you are detained under the Mental Health Act 1983, you will experience reduced rights. However, you still have some rights, such as:

  • Seeing an Independent Mental Health Advocate (IMHA)
  • Seeing visitors, writing to people, and some phone calls
  • Speaking to hospital managers
  • Appealing your section at a tribunal.

More options

Speak to the NHS Patient Advice and Liaison Service (PALS)

PALS officers are based in local hospitals and provide support for patients, carers, and family members. They are not a specific service. Instead, they are a general point of contact for information, resolving concerns or problems, and support making complaints if needed.

Find an advocate organisation

Advocates can help liaise with healthcare professionals and staff to get you what you are entitled to, so you can access the help you need. Usually, they are charities independent of NHS services. Some advocacy groups are NHS-run, but are separate from healthcare departments you may be having difficulties with.

Advocates, like PALS, can also support you to make a complaint. Try getting in touch with the following organisations as a place to start: theadvocacypeople.org.uk and pohwer.net

Find peer support

You may find your mental health doesn’t improve while trying to either get a second opinion, file a complaint, or come to terms with a diagnosis that feels wrong. Connecting with other people who have the same or similar diagnoses can be a massive help. Not only will they understand what you are going through, but they are likely to have plenty of tips, or life hacks, to help with everyday challenges. Search for support groups or group therapies. These are often charities with reduced or no fees.

Find talking therapies

Seeking out a psychotherapist or counsellor can really help. They can provide a space that does not view you as a diagnosis, but as a person who needs support. They will not judge you, and work hard to understand your feelings and situation without diagnosing or labelling you.

You can also visit our ‘where to get help’ page with listening lines and guidance.