Vicky’s story – the long road to diagnosis

by Vicky

Vicky

Hello, I’m Vicky! I’m 36 and was finally diagnosed with Psoriatic Arthritis in my early thirties. 

It took me a long time to accept my condition for lots of reasons. I’d always looked after myself and been active so couldn’t understand why I suddenly felt unwell, but what I found hardest was that my diagnosis kept changing.

The seven-year itch 

It took me seven years to be properly diagnosed. My symptoms started with pain in my body and really bad fatigue – but no swelling. 

At first, doctors told me I had ME, probably off the back of a virus. I remember thinking “I haven’t had a virus. I’m not sure this is right”. Something didn’t feel right and for some reason, my gut was saying rheumatoid arthritis. However, I lived with this supposed diagnosis for years – until I started getting pain in my jaw. 

Then, doctors said “ah ok, it’s arthritis in your jaw. That’s your diagnosis. Bye.”

I was in my twenties! I wasn’t referred to see anyone else, just left to get on with it. I felt confused – no one in my family has arthritis. What was happening to me? I went along with it without any help or information for a while longer – until the joint pain got worse. 

Then, doctors decided I had fibromyalgia, on top of arthritis in my jaw. The whole time, my blood tests kept coming back normal. There was no inflammation showing, making me more confused than ever. I still wasn’t sure I had the right diagnosis and I was being told different things all the time.

Pregnancy and severe health anxiety

Eventually, I saw a really good rheumatologist because my finger became severely swollen. I was 30 by this point and pregnant. I couldn’t have any treatment but they did more tests to investigate what was going on. I think having something to physically see helped – whereas before I had complained of pain and fatigue, but there wasn’t anything to show doctors. 

My tests came back with an antibody that could indicate lupus. I was terrified. I’d gone from no-one knowing exactly what was wrong with me, to it being something potentially very bad that could also affect the baby. I was already having a difficult pregnancy with vomiting, but it became more stressful as the fetus’ heart had to be checked weekly. 

Vicky, her husband, and son LucaEverything turned out ok and my pain disappeared. I was delighted – pregnancy had cured me! Of course, it all came back after my son, Luca was born and that’s when my rheumatologist gave me my Psoriatic Arthritis diagnosis.

But I didn’t have any psoriasis. And my blood tests continued to come back normal. I still questioned this latest diagnosis.  Reaching this stage had dragged on for so long it had stopped me from trusting any medical professionals. I questioned everything.

All of my experiences affected how I reacted to any new, slight twinge in my body. I thought a tiny pain in my finger would automatically mean I was going to lose all movement in that hand forever and I obsessed about the worst possible outcomes. I’d developed severe health anxiety.

I sound like a mad woman! 

I realised it was time to get help after noticing my anxiety was transferring onto my son. He had similar behaviours at the age of five and I didn’t want him feeling like I did. 

After taking part in a generalised group therapy session, I had virtual Cognitive Behavioural Therapy (CBT) to specifically help with health anxiety. 

In the sessions I’d be talking, saying these extreme things I imagined would happen out loud. It was only then I thought “I actually sound like I’m losing my mind. I sound like a mad woman!”. 

Getting the tools to help myself 

CBT was really helpful by making me look at the facts of a situation. It gave me the tools I needed to help myself.

Health anxiety is still not easy – there’s an irrational part of me that thinks my jaw is exploding  when the facts tell me no, it’s a wisdom tooth. Your jaw will not fall off! 

As I’d always been healthy – a vegetarian all my life, active, didn’t smoke – I still question my diagnosis at every appointment but recognise that I’m in a good place now. 

I’ve reached a level of acceptance about my condition but there is always going to be part of me that wonders “what if it’s something that can be treated easily and I don’t have to go through all of this?”. 

Standing my ground at every medical appointment 

Sometimes, doctors need reminding that we know our bodies best and patients must remember that they’re in charge of them. 

When I was younger, I felt like I had no control but now I’m older – and with experience, I feel empowered at appointments. I make them justify their diagnosis and stand my ground if I think I need more investigation. 

I found it infuriating that my blood results don’t show inflammation and mentioned this to my rheumatologist on my latest crusade. For the first time, I discovered that this is more common in Psoriatic Arthritis. I was suddenly enlightened! 

I get it now, but without probing I might never have known. 

Not everyone fits in a neat box 

My view changed after a conversation with one of my lovely rheumatology nurses about why they think it’s Psoriatic Arthritis.

She said the immune system is so complicated that not everyone fits into a neat little box. So, we’re placed into the nearest one that means getting better access to more treatment options. 

After that, I could accept that there is something up with my immune system. Maybe I don’t have a classic case, but it is a form of inflammatory arthritis. I realised these conversations are so important to have and I’m right to question what’s happening to my body. 

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