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Tilly Rose - Invisible Illness

Tilly is the founder of 'That Patient Collective'. She lived with 13 years of undiagnosed Tuberculosis, Addison's Disease and last summer spent 3 months in hospital and left without a diagnosis. She is now attempting to live some sort of life whilst desperately searching for a diagnosis...



1. Which of your symptoms are invisible?


So many of them; palpitations, nausea, bladder/intestine paralysis, dizziness, sleep difficulties, trigeminal pain, nerve pain, muscle cramps, headache, mostly the pain, the pain is all angrily kicking off inside but not always visible. It's a hard one though, because I potentially hate the ones that are visible even more; the swelling, the burning skin, the spasms. These are just as awful and also change my appearance which psychologically gets to me too. It's horrible to look in the mirror and not look like you. 


2. What do you wish people could see about your illness?


Sometimes, I wish they could see it all! Sometimes, I also kind of wish they could experience it...just for an hour. Urgh the fact I'm even saying that shows how awful it is. I wouldn't want anyone I love, actually just anyone, to have to live in my body for more than an hour because a lot of the time it is torture. Much of the time that torture is invisible to the outside eye, one, because the symptoms are acting out on the inside and two, because I am the queen at hiding them. I wish they could see the pain, the dizziness, the nausea, the headaches, the muscle cramps, the intestine paralysis, the bladder paralysis, the sleepless nights but then, I am also sometimes really grateful that some of this is invisible. When I just want to be 'Tilly', not 'Tilly the patient', I can be that girl because most of the time when people meet me, they say they 'wouldn't imagine there was a thing wrong'. Sometimes I LOVE this and sometimes it drives me mad that they don't get it. I can't make my mind up, can I? Chronic illness/invisible illness is so messed up.


3. How does having an invisible illness affect you socially?


My friends and family are incredible and I am so lucky to have so much love and support but (hate to break it to them) they have grown over the years. Day one, I remember friends telling me to 'have fun!' when I headed off to hospital appointments. I used to think 'fun', are you for real? This also made it hard when I couldn't do things, when I had to pace myself or bailed last minute. I'm sure people used to think; how can she be that ill when she looks fine?


I actually think my Instagram has helped a lot in a weird way. As well as all of you guys, it has given my friends and family way more of an insight into the 'invisible' side of my illness, the side either not visible to the eye or the (often grim) scenes which take place behind closed doors. It has taught me that people can't truly help unless you let them in. 



4. How does having an invisible illness affect you at work?


When I first graduated, I was so set on being 'like everybody else' that this put me under serious stress. I remember being on the Oxford Foundry business accelerator with That Oxford Girl. It was such an amazing opportunity and I was so scared that if they realised how poorly I was, it would all be snatched away. I was living this double life, sitting there in full makeup, looking the picture of health in the workshops, then dashing to the toilets to inject myself with steroid and getting in each evening and throwing up. I wish I could tell younger Tilly that she could have been more open and it wouldn't have all been taken away.


5. How do you feel when people use the phrase 'you look so well'?


This one is a tricky one too - sometimes, I want to scream. I panic that they don't believe I can be so poorly and want to shout, if only you knew how it really felt! Then other times, I love that I can head out with my pals and not let this illness define me. Again it's a lose, lose. 


6. Share a top tip for our readers on dealing with invisible illnesses


Share the nitty gritty of what really goes on behind closed doors. When people ask how you are, don't just say 'fine' or 'good'; tell them it's utter crap but then show them what that looks like. Give them a glimpse into what your life is like on a daily basis. Once people understand, they might surprise you. Most people want to help, they just don't always know how. Let them in and make it easier them to understand. 

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