By Tilly Rose
My name is Tilly. I lived with 13 years of undiagnosed active TB and very unstable Addison's Disease. Last year I was diagnosed with multiple vascular compressions which I have subsequently had 3 surgeries for in Germany. I write about this on my Instagram @thattillyrose.
How have the people around you supported you through patient life?
I am so lucky to have my 'team' as I call them; Mum, Dad, Boyfriend and Auntie. Patient life really does take a team. I hate that it means I have lost so much of my independence and am reliant on those around me but realise how fortunate I am to have people who love me and are there for me. They all have their different roles; Mum is the person I talk to, Dad always makes me laugh, Auntie is amazing with all the practical stuff and Boyfriend is there throughout motivating me to get better.
My surgeon only said to me recently that research shows people with a support network are more likely to get better and I can really relate to that. When I feel like giving up, my team are there to encourage me to keep going. I hope with @thatpatientcollective we can also provide a patient-to-patient platform of support; sometimes just reading about someone else who is going through something similar, is enough to make you feel less alone.
How have friends shown they care?
During my time in Germany, my pals have been brilliant. My two best friends came out to visit when things became really stressful after my second surgery and my mum became unwell. My best friend Em stayed with me at the hospital and really did do it all; from reading out magazine articles to me, massaging my spasming muscles, waking with me in the night to take my meds and even washing me. That is true friendship.
My home girls and uni girls have also constantly offered to hop on planes to see me. Until recently I hadn't been well enough but they have shown they care from afar in so many lovely ways. Keeping up with messaging me, engaging with my updates and sending me cute cards with motivating words have made me feel loved even when I haven't been able to see them. People don't need to physically be there with you, to show that they care.
Have you been let down by other people during your patient journey?
Yes, for sure. I often think that when someone ends up in hospital once, there is often a big reaction; everyone gathers around, visits them, buys gifts etc., but what happens when your whole life becomes a cycle of wards, waiting rooms and emergencies? People start to think 'Tilly's used to it' but let's face it, you never get used to being a patient. If anything, I think it's so much worse to keep having to be a patient, to keep being in pain, to keep ending up in hospital. It is one thing in life that never gets easier the more times you do it, it gets worse. It's sad when people send a card the first time you are admitted to hospital but then don't the tenth or eleventh time. Watching other people's lives unfold from the side-lines is difficult and people don't always stop to think.
What do you look for from the people around you?
Kindness can be shown in so many different ways, a text, a hug, a card, a gift, a visit, planning something fun or just being willing to hang out on the sofa when I can't go out. Two of my friends have constantly sent out homemade flapjacks for my mum and me, with my dad and boyfriend each time they have travelled over to Germany. Showing this cafe towards my family means a lot to me too, as this is traumatic for them and people don't always register how much it impacts those around me.
I also think consistency and loyalty are the most heart-warming traits; those friends who are constantly there, even when my journey continues for months and months or even years and years are the best!
Top Tip for any patients struggling to get those around them to understand:
Over the years I've realised most people want to help but don't always know how. Rather than saying 'oh don't worry' when people offer, TELL them! I now reply to my gals saying 'yes some more flapjacks would be amazing, thank you!'. Let people in!
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