The Trauma of Being Misdiagnosed -

You might wonder why I am sharing my story now, and it is because sometimes someone else’s experience gives us the opportunity. Christina Applegate has opened up about the trauma of being misdiagnosed with Multiple Sclerosis, and the same thing happened to me. So, I thought I should share so nobody feels alone if they experience the same thing, because I felt so alone when I went through this.

A woman is seen leaning on a sofa crying, beside her is a telelphone and the picture is black and white to represent The Trauma of Being Misdiagnosed — Photo by Anthony Tran on Unsplash

Five years believing I had MS

I lived with the diagnosis of Multiple Sclerosis for around five years, I had a whole team of MS nurses, physiotherapists, a specialist and regular testing and support. I felt so supported and was on medication aimed at slowing the progression of the disease, including injecting myself once a week.

It was why I started blogging, and I had an incredible community around me, I loved how open and supportive the community was. It was such a overwhelming time, with me often being in hospital for high dose steroids and treatments. In the middle of it all I met my wonderful husband and it just felt like I finally had answers and could move forward in my life.

The day I was told it was a mistake

Then one day, I was called in to see my MS specialist, who told me and my mom who was my carer then, that I did not have the illness. They acted like this was good news, but to me it was devastating, they told me they did not know what was wrong with me. That I had neurological issues that I was probably born with so they wouldn’t look into them.

I was discharged, that day I lost all my support, the MS nurses, regular updates, treatment, all of it gone overnight. Yet, my symptoms remained the same, and reading about Christina Applegate’s experience, I realise I am not alone in this.

I was left back at the beginning, doctors shrugging and having no answers, or being given several diagnoses to explain the symptoms that hadn’t changed. Even now over a decade later, I struggle to get passed the trauma of being misdiagnosed and to believe the illnesses I am told I have.

Left to find the answers alone

I was left alone to try and find answers; I was not given any help to navigate trying to find answers. The fight to get help began again, and like so many women have experienced for generations with modern medicine. I was treated like I was mentally ill or lying, everything changed the day I was told I did not have MS.

It was as if it should be a happy thing, and yes of course I was grateful not to have such a complicated neurological illness. But to not have any support from the team who had misdiagnosed me and treated me for five years was incredibly impactful on my mental health.

A diagnosis being wrong doesn’t mean you’re not ill

Withdrawing a diagnosis, and the care a specific team gives, does not change the physical symptoms a person experiences. And to suddenly not know what is wrong is terrifying, it causes so much doubt in your own lived experiences and how the people around you see you.

I think it should be so different, it should fall on the specialist to ensure the person receives the right care to deal with the trauma of being misdiagnosed. There should be support and a clear path forward with support in finding the correct diagnosis not just discharge.

Why I needed to tell this story

I hope by talking about this, I can help others to feel less alone, and I hope that Christina sees this somehow. She is not alone, and she has let nobody down by having the wrong diagnosis, in fact she has helped me by being honest and open. The trauma of being misdiagnosed has always been there for me, and seeing someone in the spotlight go through this makes me feel seen and less alone. I only wish that for her too.

Thank you xx

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