In 2015 I developed various symptoms that came out of the blue. I felt like I was about to faint and was out of breath when I stood up. My GP assessed me, discovered I had a high temperature and set me to the hospital for a chest x-ray suspecting a chest infection or even a spontaneous collapsed lung. The x-ray came back clear, but the symptoms didn’t go away.
Over the weeks that followed, I attended the hospital on more than one occasion, feeling so unwell that I couldn’t even sit up in the waiting room without nearly passing out. Although they were witnessing real clinical symptoms, the doctors couldn’t make a diagnosis. I was told to go home.
I knew that something was wrong, and I felt dismissed and belittled (I now know I’m not the only woman who has been told that it’s all in my head). After a medical consultant decided that he was no longer prepared to investigate my symptoms at all, I felt completely alone. My family tried to be supportive, but they couldn’t appreciate quite how ill I felt.
My energy levels were rock bottom; I was exhausted. I couldn’t even shower without having to sit down. I had to take months away from my job as a Community Nurse, and my husband had to take time off work to take care of our two young children (and me).
That was a really scary time, and without medical help, I knew I had to take control of things by myself.
I needed to find a way to move forward
I knew that if I was going to be stuck in bed, I might as well try to make use of that time. I spent hours, days, weeks, scouring the internet for stories of other people who had experienced the same symptoms as me. I researched alternative therapies, nutrition, managing energy levels, how to boost my immune system and anything else that I thought could possibly help me feel better.
I discovered that many, many other women had also been dismissed and told to ‘go home’ when doctors couldn’t find a diagnosis, only to receive an answer months or years down the line.
Over the months that followed, I dedicated myself to learning and trying out the new concepts and ideas that I was finding. I changed my diet, and I gave my body what it needed when it needed it, whether that be sleep, rest, food, or movement. I pushed myself physically when I thought I could and rested when I knew I needed it.
It definitely wasn’t plain sailing. But I did manage to get to the point where I could return to work. I started a new job in an area I was excited to work in, but after just three months, I had to leave as my body just couldn’t cope.
I’d reached a turning point. I knew this couldn’t carry on. By this time, I had built up just enough mental and emotional strength to return to trying to get a diagnosis, and through my research, I had come across the name of a specialist who I thought could help me. I went back to my doctor, armed with the details, and was finally referred for a second opinion.
Within 5 minutes of our meeting, the specialist had assessed me and given me a 100% confident diagnosis of PoTS (Postural Tachycardia Syndrome) with Post-Viral Chronic Fatigue. It was that simple. This started the ball rolling and allowed me to get the help and support I needed to get back on track.
There is no cure for PoTS, and the professionals don’t really understand why it happens or what causes it. In my case, it was probably brought on by a viral infection I was experiencing when I first attended A&E almost a year previously.
From then, to now, my life is almost unrecognisable. I eventually left my career in nursing as it just wasn’t sustainable with my condition. I retrained, set up a business and learned new ways of living my life, with a new respect for my body.
I’d even go so far as to say I’m almost glad I got ill. It has forced me to reconnect with myself, learn to love myself and appreciate the amazing things my body can do.
Instead of thinking ‘why me?’ I can now think, ‘well, why not me?’.
Throughout this journey of accepting and learning about my chronic illness, I’ve met many women who are in the same boat. They may have different stories of their path to diagnosis and are experiencing a variety of different conditions, but there is a common thread. They have all had to come to terms and accept their new reality and grieve for the life they had before.
But another thing they have in common is that they are all strong and determined. Having a chronic illness doesn’t stop you from being ambitious and driven. In fact, to manage a chronic illness alongside children, a job and running a house, you have to be driven.
I also came to realise that there is limited support out there for women experiencing chronic illness; A lack of positive and uplifting support from real women who are living and thriving, despite having chronic illness.
Other online spaces can be negative and emotionally draining – which I think is totally understandable. Many of their members are dealing with life-changing symptoms with little help and are struggling to cope as a result.
I get it. I too, spent time in these chat groups or forums in the beginning, until I realised that they were pulling me down. Feeling others’ pain and despair was adding to mine, and it was emotionally draining. I made a conscious effort to avoid them and only allow myself to seek positive support that boosted my energy.
I know that other women feel the same. With The Chronic Wellness Project, I want to create a safe and inspiring space where women can come to recharge, to read about other women’s successes and how they have overcome hurdles to build the life they want.
If ambitious and determined women come together, we can build a powerful community to support and encourage one another to face our chronic illnesses head-on.
To get back to basics and pinpoint the areas you need to focus on to improve your wellbeing, download the Weekly Wellness Tracker.
Want to read more? Explore the blog.