What if we viewed lived experience as an asset? As an asset of professional, economic,…
You see me at my worst. You see me stuck in a bed in hospital, in pain, struggling, fighting repeated bouts of sepsis, reliant on more IVs and pumps than I already am at home, covered in bags and tubes that dictate my survival both outside and inside hospital, and you see me in a medical viewpoint. You don’t think about my life outside of hospital, because it’s not considered essential for my care. You don’t need to know who I am, or what I do. If it’s not key to my survival, it’s not important.
Wrong. Who I am and what I do is key to my care and my survival. It’s my identity. So often this gets lost in the sea of medical words, test results, histories, examinations and prescriptions for medications. It gets lost in a world where the condition is who you are, it’s how you’re seen. I’m not Lucy Watts MBE, Charity Ambassador, Patient Leader, Writer, Speaker and dog-lover, I’m often simply “That girl with Ehlers-Danlos and intestinal failure who has all those tubes and bags and who is bed bound”. “Send the medical students round as she’s a great practise case”, which I love to do. However, that is not all I am. I am not a condition. I am a person. I have a life. A meaningful life. I strive to advocate for and make life and services better for others. I take my experiences and turn them into actions. I am always working, always learning, always doing something for the greater good. Always trying to give back more than I take from this world. Always trying to make my healthcare professionals know how much I appreciate their hard work. The girl who writes a blog, makes speeches, fights for others, and strives to make the world a better place. The girl who thanks the world every day for the people that fight to keep her alive. That’s who I am.
You don’t know that though; you don’t ask, and very often, I don’t have the time to tell you all about myself. So if you wonder why I try to squeeze essential bits of information about me into our conversation, please hear it and take it on board. It’s my way of humanising me and making you see that I am more than just a girl trapped in bed. It’s not detracting from my care, it’s enhancing it. It’s not me giving you information that isn’t helpful, it’s showing you who I am. What’s important to me. Why I fight to survive. Why I am so grateful for your hard work to keep me alive. Information that is crucial to why I fight so hard to survive, even when you look at my life from the outside and think “is all of this worth it?”. To me, everything is worth it. I will never give up. Life is too precious, and I have so much more work to do!
I wish all patients families would bring in a picture of their loved one prior to admission, and keep it by their bed or on the wall, reminding doctors and nurses of the person they are aside from their illness. To see the person as their true self, as opposed to the person before you who may be confused, upset, covered in wires and tubes, sedated, maybe swollen or jaundiced, and very, very poorly. A picture can make the world of difference. It humanises people. I myself know the benefit this has to healthcare professionals, and I can imagine it especially makes a difference to patients in ITU/Critical Care who may be covered in wires, on ventilators, very swollen, sedated and poorly and it must be hard to picture them as their usual self, minus all the interventions and outward signs of how poorly they are. Pictures remind staff that the patient is a person, and helps them to see who they’re caring for. My home ITU nurses, many of whom still work in ITU in the NHS, all agree that a picture makes a big difference, and helps them see the person as they are outside of hospital. I know when I take photos in of me, nurses – and doctors if they have time – find it very useful to see me outside of hospital. It does help. I usually get a remark from most professionals if I put a picture up, and it does make a difference. I remember when my hospice nurse Bev came round one day and she’d only ever seen one picture of me before I became ill and that was a picture I have in my bedroom of me on a coloured horse jumping at a show prior to becoming ill. She’d not seen me aside from the poorly patient she came to know. So one day, we got out some photos and selected our favourites to show her. What a difference it made for Bev to see me as I grew up, the person I was and what I looked like. She was really glad we showed them to her. Bev always sees me as a person and knows me very well, but it even benefitted her. When I take them into hospital people always comment and it’s lovely. It just shows them “me”.
I have a medical file I made for myself with all my information in it, and I always hand a copy in upon admission. The front page contains a photo of me, so you start off the file seeing a picture of me as I am at home. Then the final page of that medical file is a page all about me aside from my illnesses. It has a summary of my charity work, about me as a person, what I do outside of hospital, and has three photos of me at the bottom of the page. Doctors don’t get the chance to read that page, but when the nurses do, they always comment on it. It just allows them into my normal life as it is at home, shares who I am and what I do, sharing this with people who are overstretched and can be forced to see a condition and care needs rather than a patient due to a lack of time to treat patients otherwise.
Pictures are invaluable in medical care. It humanises patients. It shows them who you truly are, aside from what brings you to hospital. That you have a life outside the confines of the hospitals, and any pre-existing conditions you may have. It shows who you are, a person, with a family and friends, a life, hobbies, interests, goals. A life you are fighting so hard to get back to. So, next time you are admitted, put a picture on the wall or bedside. Show your professionals who you are. Show them why you fight so hard to get better. Show them you’re more than a condition or list of symptoms. You are you. You are unique. You are loved. You are a person, not just a patient. And you have a life to get on with living!