Welcome back to our series "Letters to my younger self".
If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?
In this series, RARE Youth Revolution is reaching out to some of the slightly older members of our community who know what it is like to grow up with a rare disease.
By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.
Dear my younger self,
You make it. Well, so far anyway.
I’m not going to lie and say that your journey is easy. Your strength and resilience will be tested over and over, and you’ll walk the line between this life and the next a few too many times.
You have grown up knowing that you are different. Your Marfan syndrome diagnosis came early in your life but not before you went under the knife at 18 months old. The first of your many lifesaving or life-altering surgeries I’ll add. Unlike many others with Marfan syndrome, you are the only one in your family. A random event, a lottery you wouldn’t like to win, a mutation.
You joke throughout your childhood that you’re waiting on your invitation to join the X-Men but that joke is only to hide the isolation and shame you feel about being, oh, so different.
If there is one thing I could tell you, it’s to cut yourself some slack. Whether you recognise it or not, you are disabled. You won’t shy away from that word when you’re older, but I know you don’t recognise it now. This pushes you to overdo it. To push yourself past your breaking point and to not recognise your rare disease and the impact that it has on you, your body and your mind.
You will spend your childhood in and out of hospital. Your collection of X-rays will be so heavy it rips the folder that they live in. You’ll stay inside most summers with your feet in a bucket of cold water and a cold flannel around your neck. Your plaster of Paris for your scoliosis will stop you from the summer activities that your school friends are doing at the local pool out in the sun, but you’ll find solace in movies, musicals and colouring in. Don’t worry, that doesn’t last forever. Your spinal fusion comes earlier than expected but you get through it—although they nearly lose you, you take the challenge head-on and leave the nurses giggling as you leave.
During the many appointments, get used to the idea and concept that you are interesting. The student doctors get excited when they hear your diagnosis because you are a textbook come to life in their world. Although you do enjoy testing them on all of your “aliments”, know that it’s important to teach the future doctors about rare diseases, so bear with them.
They fix your heart before it bursts. Again, in true form, you give everyone a scare, but you dance through with humour and grace. Now, you’re just about to turn 23 and you think you’re invincible, but I can tell you for free you are not! Take your meds! In this life you forget to sometimes, you miss a blood test or two and you don’t watch what you’re eating, and you nearly pay the ultimate price.
You were lucky with your stroke; you only saw a snippet of a life that so many are left with. You can walk and talk again but a few words and names have gone missing, but you get by. People will continue to be shocked by how much you’ve been through at your age and will comment on how mature you are for as long as you can remember. Honey, that’s trauma and therapy is your friend.
You’re so much more than you think you are. You are worthy of love, of happiness, of rest. Rest is a right, not something that has to be earned.
You are loveable, I know you don’t think it, but you are. You are so much more than your conditions and your surgeries and your scars. You are smart, funny, caring and strong, but you don’t have to be all the time. Let people in. Let them help you like you would help them. Pain is lessened when you share the load.
Oh, I nearly forgot, your podcast! You and one of your best friends run a global podcast and you talk about normalising invisible disability and living with a chronic illness. People message from around the world, thanking you for sharing your story and for speaking about the realities of balancing life and illness. You are making a difference. Speaking of making a difference… You’re a nurse now. You help children and their families, like you were helped by so many beautiful nurses during your life. You are even working in a rare disease speciality centre. You get to teach other health professionals about rare diseases and how best to recognise patients like you.
Keep going. Keep smiling. You make it.
Find out more about The Chronic Sisters and their podcast here: thechronicsisters.com/about-us
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