Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine
About you
Linseigh Green is a writer, actress, singer and immersive audio producer. At birth, she survived necrotising enterocolitis (NEC). She has spent her life fighting the disease’s long-term outcomes, alongside a brain tumour and functional neurological disorder (FND). Linseigh began her advocacy work in the NEC community at the age of 19. She has since spoken at rare disease conferences around the world; delivered an educational seminar for Cambridge University Hospitals; raised NEC awareness on broadcast television; met with US Congressional offices; published writing in magazines and journals; and helped create the first known research project focused on NEC’s long-term outcomes in patients older than 24 months. Her parents were told she would never succeed academically due to NEC; she now holds three university degrees, including a master’s from Cambridge. Linseigh is currently touring the UK and Ireland with the hit West End musical The Drifter’s Girl.
Your biggest motivation
I’ve always been stubborn when it came to my illnesses—yes I’m different, but I still want the same things as the next person. And I deserve a full life, so I’ll fight for it as hard as I can. Functional neurological disorder was a major turning point for me. Because my body was never well, I relied too heavily on my brain. So when I developed cognitive dysfunction, I had to completely relearn how to live my life and harness my potential. And after I was hospitalized with paralysis, everything seemed so small. I lost the ability to waste my energy on petty things, and instead developed a hunger for peace and a greater proximity to the vibrant, spontaneous pulses that make us feel most alive.
When I was diagnosed with FND that summer, it was a death sentence for my future. I had only just finished university. I’d spent my whole youth preparing for that moment: “the real world” of adulthood. And just as I was finally on the launchpad, my wings had been clipped. For a while, I fell into a pathetic pit of grief and felt less than human. But then I thought, “You know what? You can’t talk or walk and you can barely open your eyes or read, but you can act.” So I did. And then I got an agent and have had the privilege of tackling one of the most challenging leading roles in a musical with minimal preparation and only a few hours’ notice.
There’s something liberating about falling from the cradle of certainty. When I stopped living with the expectation of a future, I relocated my somedays to the present. And now I’m living my dream and couldn’t be happier with my life. I don’t know how long I will be able to do what I’m doing, but I don’t dwell on that. I always say, “I’ll keep going until they have to drag me off the stage.”
Your greatest achievement
When it comes to my mission, my greatest achievement is the long-term NEC outcomes project. I had to fight so hard for that one, and I’m still fighting for the NEC community to recognize the needs of former NEC patients. Some of them rely on feeding tubes; suffer from severe brain damage; grow up in hospitals. Their parents struggle each day to keep them alive. Some patients tragically pass away years after their initial survival. And they can’t access care because they’re too old for the NEC community to take responsibility for them, and too under-researched for paediatric and adult specialists to help or validate them.
The personal achievement that keeps me going is the fact that after FND threatened my ability to read and write in the middle of my Cambridge Creative Writing MSt dissertation, I managed to graduate with distinction. If I can get a top honours Cambridge degree with cognitive dysfunction, why darling, I can do anything.
What’s next to strive for?
An official name for NEC’s long-term complications; sustainable treatment (or cure) for FND; normalising the presence of disabled talent on our stages. And, if my FND cooperates, finishing my memoir.
Advice for other up-and-coming advocates
About a year ago, I was very depressed and ill. I was working at a nonprofit and was the first point of contact for hundreds of families who had recently lost a baby or whose babies were fighting for their lives. Some of them found my personal accounts and sent me tons of X-rays, photos, videos, asking me to help save their child’s life.
Sometimes I just cried, because these people were coming to me in one of the most unfathomably destructive moments of their lives, and I couldn’t properly hold their hand.
On top of that, I faced some resentment and unkindness from people who did not like the idea of my presence as one of the fortunate ones who did survive; and they certainly didn’t like the fact that I was advocating for the inclusion of long-term outcomes in the NEC discourse. But I stayed, because at the time, I was often the only NEC patient at the table; the only one fighting for these patients. And if I left, I didn’t know if there was any hope that people like me could ever be okay.
When I realized this was making me mentally and physically unwell, I made the very difficult decision to walk away. After a break, I resumed my rare disease work, but as an independent body. As a patient advocate, please remember that your wellbeing also matters. No matter what others say, it is not selfish to take a step back and look after yourself, as you cannot help others if you don’t preserve your strength. And if you are the only patient in the room, remember that you are more than competent and qualified to be in this space, because you have the treasure of lived experience. You know your disease better than anyone else, because it is your body. And that’s something you can’t get from a lab or M.D.
The tide will have turned for the rare disease community when...
We no longer have to plead with the world to see that our futures are worth fighting for; even if we come in smaller numbers.
Socials
Instagram: @linseigh