Developing OCD after an infection: my mental health journey

Topics mentioned: OCD, counselling and therapy

About: Emma shares her experience of a rare condition called PANDAS which caused her to develop OCD after an infection.

First being hit with the realisation that you’re struggling with a mental health issue often feels like you’ve not only been chucked into the deep end, but also that the ladder has been removed from the pool itself. At least, for me it did.

In September 2012, I broke down in the school playground. I didn’t know why, except for the fact that I was scared and that there were thoughts that made my stomach churn, floating around in my head.

I had had increasingly terrifying thoughts the week before and on that day, they hit their climax. My friends, young and naïve just like myself (we were only 11 at the time), crowded around me. Hugged me. Promised me it would be okay. I still remember seeing out of the corner of my eye the panic that they showed after I had confided what my thoughts were saying.

They did what any child would. They said, “Let’s go and get a teacher.”

It was when all of the teachers fell silent that I knew there was something incredibly, distinctly wrong. They called my mum – which, as a worried student, felt like the end of the world – and we went home. My mother rang the doctors, and I found myself at the surgery as an “emergency case” no more than two hours later. The doctor I saw has always stuck with me. She listened, put her pen down, gave me the sympathetic nod. I thought that maybe this was it, she would have the answers. I held my breath.

Instead, she told me to go home, have a hug with my mum, and stop watching detective shows. I was dumbfounded. Was I making it all up in my head? So, home I went.

Spoiler alert: stopping watching detective programmes had nothing to do with it.

My parents made sure that I got my help. I am incredibly lucky to have had the support I had and still have. Within weeks, I was at my first CAMHS appointment, being diagnosed with a type of OCD known as ‘pure OCD’ and general anxiety disorder. I developed OCD as a result of paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS), which is a rare condition that causes OCD or other mental health problems to appear suddenly following a streptococcal (strep) infection, such as strep throat or scarlet fever.

It started when I got a sore throat, which I put down to getting a cold as we went into autumn. However, it soon revealed itself to be a streptococcal infection. My OCD symptoms appeared almost overnight, with only a few signs the week before that something was wrong. The rapidness of the entire situation made it ten times scarier, as I never really had the time to prepare myself for what was to come. Although, can we ever prepare ourselves for mental health issues?

I went through my first of many rounds of counselling and had a taste of cognitive behavioural therapy (CBT). My counsellor was a wonder and really helped me deal with the worst of my physical compulsions. Alongside that, I was prescribed medication. At the time, it felt shameful to be 11 and taking medication. Over time, I have learnt that taking tablets is anything but shameful. Thankfully this stigma seems to be disappearing more as the years go by.

Getting help was a blessing, but please know that you should never be ashamed of how long it takes you to get help. Be it two weeks or two years, the fact you have taken the leap is just incredible.

So, that brings me to the here and now. Coming up to eight years later. I did have a relapse in my recovery, but I don’t think that’s indicative of not making progress - in fact, it proved to me that I had made progress.

At this point in my life, I am on the waiting list for Steps to Wellbeing, which is a wonderful, free NHS service in my area, allowing people over the age of 18 to receive professional help. I unfortunately have become too old for CAMHS but I can safely say that they got me through my teenage years.

Having your childhood end at 11 is rough, but it came with maturity that allows me to recognise, even today, that I need a little help still and can take a positive step in the right direction. Don’t get me wrong, that step can feel like you’re fighting quicksand, but it’s a battle you absolutely can win.

But I am proud of me. Unequivocally so. And you should be proud of you, too.