In July 2017, my life changed forever.
One day I was in work, the next I was rushed to hospital and told I had an incurable illness that I’d never even heard of. After months of suffering from terrible pain in my joints, vision blackouts, migraines, exhaustion and unexplained rashes, I was admitted to the renal ward at the Royal Glam after tests showed that my kidneys were failing and my optic discs were so swollen I was close to losing my sight.
Two weeks and countless tests later, a doctor took me and my family into a little side room, sat us down and told me I had something called lupus. I had no idea what it was or how it would affect my life and after a quick Google search I decided I didn’t really want to know either.
Looking back, the whole process was really traumatic. I was just 24 at the time. Fresh out of uni, I’d just started out in my career as a journalist and was excited about life and everything it had to offer.
The last thing I expected was to be told I had a chronic illness and had to take medication to manage it for the rest of my life. And I don’t think I ever really dealt with that properly.
For years after I was diagnosed, I tried to block it all out. I lived my life as though there was nothing at all wrong with me. I never read anything about lupus, I never joined any groups or forums (mainly because a lot of them were negative and scary) and I never talked about the trauma I felt during my diagnosis.
Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of your body.
It’s an autoimmune disease, which means that your immune system – the body system that usually fights infections – attacks healthy tissue instead.
Symptoms of lupus include joint pain, extreme tiredness and rashes.
Many people with lupus also experience photosensitivity or unusual sensitivity to sunlight. This can trigger symptoms such as skin rashes, itching, and burning. Excess sun exposure can also cause flares in systemic lupus, triggering symptoms such as joint pain, weakness, and fatigue.
There’s currently no cure for lupus, but the symptoms can often be treated with medicines that reduce inflammation in your body, such as steroids and immunosuppressants.
Whenever I went to lupus clinics, I wore headphones so I couldn’t hear people in the waiting room talking about their symptoms, and I came out of each appointment in tears because it was a painful reminder that I wasn’t the healthy person I tried so hard to convince myself that I was. So, I’d just live my life blocking it all out – taking my mind off it by throwing myself into things that made me happy. And, when I did have to talk about it, I only focused on the positives.
But, it isn’t always that easy, and this overly positive ‘sunshine and rainbows’ attitude ultimately had a really negative impact on my mental health. It sounds strange criticising myself for being ‘too positive’. Obviously, it is important to be positive – but, it’s also important to accept the things you find difficult too.
The past few years have been a vicious cycle. I’d have a few good weeks – exercising, rushing around, working, exploring, and generally just living my life at 100mph. And then every few weeks or so, I’d just break down.
I’d spend days feeling awful and exhausted, which ultimately led to terrible panic attacks and anxiety that I would get ill again. I wasn’t being kind to myself at all. And, I realise now that – as strong as I thought I was at the time – in reality I was just locking everything negative and painful away in a box and not dealing with it.
So much so, that if there was any mention of anything negative or anything I found difficult to accept – any article that talked about mortality rates, any TV show that explored the severity of lupus, any side effects or symptoms my doctors had to warn me about, basically anything that threatened my sunny disposition – I’d crumple. I was like an emotional volcano, that would erupt every few weeks or so.
And that was pretty much the case until a few weeks ago. I’d not long had a terrible panic attack walking on the beach in Porthcawl, and I realised that if this was to stop I had to start coming to terms with the reality of this illness – the good AND the bad.
Around the same time, I was contacted by ITV, who asked if I’d be interested in taking part in in a Wales This Week programme about the difficulties of living with a long-term illness and how the NHS is going to cope if the number of people being diagnosed with chronic conditions increases after the pandemic. And to be honest, I was a bit apprehensive at first.
The panic attacks had chipped away at my confidence, and I often felt jittery in situations outside my comfort zone. But, I realised this might be my chance to address the issues I’ve been avoiding for the past four years. So I agreed to do the show.
And it turned out to be one of the best things I’ve done. It was like therapy for me. I met so many wonderful people who also had lifelong illnesses like me – and I realised that it was the first time I’d talked about the true reality of my illness and my diagnosis and didn’t break down in tears. In fact, it was the first time I ever sat down and talked about my illness face to face with anyone (outside of my friends and family) ever.
During the filming, I chatted to Trevor Palmer, who was diagnosed with multiple sclerosis – a condition that can affect the brain and the spinal cord – in 1994. He told me how he feels he’s become a better person for having MS, because he looks at life so differently now. He talked about the difficult things he experiences on a day-to-day basis, but how he doesn’t let this define him or make him a ‘victim’.
We chatted openly and honestly about our lives and the things we found difficult, and the sort of things that helped us through the hard times. We even laughed about some things.
I also spoke to Eve Bevan who, in 2015, was diagnosed with endometriosis – where tissues similar to the lining of the womb grow in other places in the body and causes severe pain.
She said: “It affects everything really in my life, my relationship, my employment. I had fertility issues as well when i was trying for my daughter. I suffer with extreme pain every day.”
We chatted about the difficulties of being in constant pain and how it’s sometimes hard to tell people when you’re having a bad day, especially because our illnesses are not visible.
I chatted to a lady called Wendy Diment, who also has lupus, and we shared our experiences of living with the disease.
It was great to be able to talk to someone who faces the same challenges as me – and we chatted about the sorts of medication we take, how we cover-up in the sun (because it can flare up our disease) and how we juggle things like family life.
At the end of it all, I felt like a part of this huge weight I had been carrying around for the past four years had been lifted.
I spent so long carefully avoiding all these painful feelings – grief for the person I used to be, trauma from my diagnosis, worry about getting ill again, panic and fear.
But now, I feel like I’m finally starting to accept that all of these things are normal, and hearing people talk about their own similar experiences with these painful feelings has helped me to accept my own.
I’m finally starting to realise that, although it’s good to be positive, this new life does come with its difficulties – and that’s OK too.
*Watch Wales This Week on ITV Cymru Wales at 8pm on Monday, or catch up with episodes online *.