19/04/2026
This week I had my second NHS vacation of the year and for the first time in 17 years of hospital admissions, my neighbour was younger than me!!
I never ever forget the people I meet in hospital and Rey was no exception, we spoke for hours about living with an invisible illness and what an inspiration she is 💜
Diagnosed with Lupus at 16 was life changing but I loved how much fight she had in her and advocating for herself, but as we know being strong is tiring.
A perfect description from Rey of how it feels living with a chronic illness, when you have so many hopes and dreams but are living in a body that cannot keep up.
“It was an absolute pleasure meeting you, finally someone who gets it, what it’s like to feel good one moment and like death in another. Who is going through the same frustrations of having a new doctor consultant everyday asking the same question “so what’s the problem?” And giving a completely new plan from the doctor before. It’s hard having an ‘invisible disability’ because it’s invisible to everyone else whilst being the biggest hill we have to climb.
Balancing between feeling sick and ‘looking fine’ eats up most of my time, though I do look fine on the outside my body is crumbling within. I’m left trying to explain a world people couldn’t imagine, living with a feeding tube coming out of my stomach, dialysis tubes coming out of my neck, having to attend dialysis 3 times per week, unable to work, unable to exercise and my uni Masters degree on a medical pause becuase this last 12 months I’ve spent more time in hospital than in my own home, I’ve had more nights spent in hospital beds than in my own. But through it all it’s made me appreciate the little things in life and not to take my health, when I have a good day, for granted.
The designer bags, flashy clothes and loads of followers on social media mean absolutely nothing, they can’t take away the pain and sickness. Having a chronic illness and kidney failure has pushed me to venture down the holistic road and find alternative natural ways to heal my body from within and to rid myself of the nasty side effects that come with our many many prescriptions.
What does help is finding people in similar situations who just get it, where you can give support, health advice and also receive it. But mostly having a friend who you don’t have to explain yourself to, loves you for you and does not put you in a box of ‘can and can’t do’ because of your illness.
It was a breath of fresh air meeting you as it is rare to come across another young person fighting the same battle. We’re often overlooked so it felt great to feel seen.
Thank you for our great long chats and including me in what you are doing. You’ve re-lit the fire in me to want to help others who are living with a chronic illness and to also educate those who are not.
A problem shared is a problem halved, what you’re doing to raise awareness and educate people is amazing and what we need more of”.
Two women, same fire 🫶
