Updated: Sep 20, 2021
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 are reaching 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.
This time around, the letter comes from Jenny Jones!
Jenny has two rare diseases – Familial Adenomatous Polyposis and Short Bowel Syndrome. After her first surgery at age 9 to remove her colon, she lived with an ostomy for 6 years before having it reversed into a Straight Pull Thru. Jenny shares about life with her rare diseases and chronic illness on her blog Life’s a Polyp (www.LifesaPolyp.com) and helps to raise funds for FAP research.
This is Jenny's LETTER TO MY YOUNGER SELF!
Dear young Jenny,
My sweet, younger self – your life will change so drastically in a very short amount of time and you won’t even remember what life was like before.
The stomach pain that started at age 8 will be nothing in comparison to what will come.
Yes, you stress too much and push yourself too hard – to the point that you’re starting to develop stomach ulcers. And that drive and the stress you hold won’t change but you will learn how to manage it better.
But that pain will lead you to medical testing to discover you have Familial Adenomatous Polyposis, just like mom and grandpa and so many other family members before. Your colon is already starting to turn cancerous but you’ll get it out in time. However, not without some complications.
The ER doctor will cut you open without sedation or effective pain management and it’s going to hurt like no pain you’ve experienced before. But you will survive it. The ER doctor is going to dismiss your pain and it will nearly kill you.
But don’t hide the pain, your pain vocalization will eventually lead to more testing and you’ll make it through.
This year will become a blur between the multiple hospitalizations and 5 surgeries. You won’t remember the details – just the remaining effects of the trauma.
Yes, you’ll have the ostomy longer than expected – 6 years to be exact.
It will take you decades to learn to love yourself. You have all the strength within you already to start loving yourself now instead of later though. You have the power to start to heal yourself now and to start experiencing happiness again now.
Yes, doctors failed you but not all doctors will. It’s okay to be hesitant about the doctors to come. Pay attention to how they treat you and you’ll be able to discern the good ones from the bad.
Don’t let your heart become hardened by all the trauma. You are so strong and so brave, if you only could see it now.
Don’t hate yourself or hide yourself from the world. I know you’re going to think life isn’t worth living because of the ostomy – but there’s more to life. An ostomy is merely a device to help someone live a better life – it is nothing negative or shameful. No one will tell you it is either, it’s all things you’ll tell yourself.
You’re going to try to hide it all and move on by yourself, but don’t. No, you need support and help. The trauma will be too much for you to deal with alone. Instead of keeping all the mental anguish quiet, be vocal. Your parents didn’t do any of this to you, they love you with all their might. They will get you the help you so desperately will need – you just have to tell them you’re ready.
I know you feel utterly alone in the world – but you’re not. You will meet countless children and adults with similar experiences and they will want to help you.
Never hesitate to use your voice and to ask questions. This will help you to learn everything you can about your health and the treatment options available to you. This will help protect you.
Your voice will help others with the same rare diseases learn to cope with their physical and mental health too. You will help others not feel alone anymore and you will help children not be so scared, like you were. You will be able to use all the trauma you will encounter to help your rare disease community. You will harness all your pain and your knowledge to forever find new ways to help others.
Remember, you are so loved in this life even when you don’t realize it.
Others will see your strength, even when you can’t. Never tell yourself differently.
Written by Jenny Jones as part of our "Letters to my younger self" series.
You can find Jenny's blog here.
To get involved with the RARE Youth Revolution, and this series, you can email our youth coordinator James Brooks at firstname.lastname@example.org.
You can also find us on Instagram @rare_youth_revolution and on Facebook @RareYouthRevolution