Raising Awareness of My Condition and Psoriatic Disease UK
- Vicky Shaw
- 8 minutes ago
- 3 min read
When I was finally diagnosed, I thought I would be able to say, “This is why I’ve been feeling so unwell,” and people would understand. I imagined they would say, “That makes sense now.” Unfortunately, that couldn’t have been further from the truth.
When I tell people I have Psoriatic Arthritis, I am often met with a blank expression. I hear comments such as, “I have arthritis in my big toe, and it doesn’t stop me,” or, “My auntie has arthritis, and she goes mountain climbing.” Others suggest I should “just try yoga,” or ask whether the skin condition is contagious.
The answer is always no, and I do my best to explain what Psoriatic Disease is. Too often, however, people either lose interest or simply do not understand. Sometimes, because of that lack of understanding, they slowly drift away.
This hit me very hard and contributed to depression and anxiety. I remember going to the hairdresser with a swollen ‘steroid face’, feeling bloated, and with my mobility at an all-time low. Sitting in front of the mirror, I burst into tears. I did not recognise the person looking back at me. Alongside the pain, physical changes, and loss of mobility, the hardest part was feeling that nobody truly understood what I was going through.
I started counselling and meditation, both of which helped me enormously. Over time, I realised that I needed to advocate not only for myself but also for others living with the condition. That was where my journey began.
Having worked in the charity and finance sectors for many years, I drew upon my existing skills while developing new ones. I enrolled with The Open University to study Health and Social Care. I also developed a keen interest in accessible technology and the health and social care system. This personal growth helped me greatly, but I firmly believe that everyone should lean into whatever makes their heart sing.
As I searched for others living with Psoriatic Disease, I came across Joel. He was around my age, had a child of a similar age to mine, and was someone I could relate to. His video helped me more than I can put into words. For the first time, I realised I was not alone.
That feeling of connection is exactly what I want others to experience, whether they are at the beginning of their journey or have been living with the condition for many years.
I later discovered that Joel had founded Psoriatic Disease UK. I immediately felt this was exactly what was needed. Other charities do fantastic work and play an important role, but this charity made perfect sense to me. I had often felt as though I had one foot in one camp and one foot in another. Psoriatic Disease is about far more than arthritis or skin symptoms alone. It is the combination of these challenges, along with the many other physical, emotional, and often invisible impacts that accompany the condition.
If, like me, you want to raise awareness and help people better understand what living with Psoriatic Disease is really like, please help spread the word. Invite friends, family members, carers, and others living with the condition to follow our social media pages. Share this post and help us reach those who may need support.
If you would like to volunteer or raise funds for the charity, please get in touch. We are all volunteers ourselves, and every bit of support helps us make a difference.
Together, we can raise awareness, improve understanding, and ensure that nobody living with Psoriatic Disease feels alone. 🧡💜
About the Author
Vicky, a Psoriatic Disease UK volunteer, has lived with psoriatic disease for eight years and has two children. She enjoys music and musicals as well as building her family tree.