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.
This is Maddox's LETTER TO MY YOUNGER SELF!
Dear younger me,
There’s so much I want to tell you and so much I don’t, but life changes for you in big and small ways. Some of those changes have already happened, you just don’t have a word for them. It’s okay to not know everything, part of having a rare disease is that there won’t be answers or research done on something and that’s okay.
One hard thing that’ll come up for you with having a rare disease is you were lucky to know about your rare disease from a young age. The problem of course is that that means your first surgery was when you were four. There’s a lot you know about it already, but Marfan syndrome is genetic, meaning you inherit it from a parent, in your case, your dad. Growing up as a caregiver and a patient is a hard balance, but you make it work. Eldest daughters must make it work somehow.
Speaking of being the eldest daughter—you’re trans now! You always have been, that discomfort you always felt around having pectus excavatum (dent in your chest) is more than disability dysphoria, it’s also gender dysphoria. There’s a reason that the comment made by your creepy orthopedist about it being a “cosmetic benefit when you get older” rubbed you the wrong way in so many ways. Speaking of the creepy orthopedist and your pectus excavatum, it’s also a bigger deal than any of your doctors realize.
Your nonstop chest pain isn’t just costochondritis like the emergency room keeps telling you, it’s caused by the pectus compressing your heart. It’s pressing against your right ventricle and possibly causing breathing issues. You see a surgeon soon to discuss if you can have surgery safely and successfully to repair it. It’s hard facing your first surgery without Dad and Nana, but you’re figuring it out with the help of your wonderful therapist. You’ve been through this five times already, so you can figure it out! But it’s also your first overnight hospital stay, so it’s okay to be nervous.
Regarding therapy, it’s okay to request a different therapist. As a neurodivergent individual, you have a lot going on and your high school therapist isn’t equipped to deal with it and instead is just gaslighting you about things. She also may or may not believe you that you’re chronically ill, while your mother has a lot of medical PTSD and anxiety that tends to bleed into your own therapy sessions, it’s not clear whether or not your therapist actually believes her that you have Marfan. Get a new one, it takes trial and error, but your current queer disability-affirming therapist is great for you. He’s even seeing you pro bono because it turns out Medicaid is more complicated to live on than your parents made it out to be. (Or maybe you just weren’t paying attention).
Don’t be afraid to ask questions of others. Rare disease is a unique experience and when your dad dies, you have lost your one consistent connection to the Marfan community. Reach out to people in the groups and ask them questions.
Your dural ectasia will worsen in its symptoms over the years, but I still remember being six and struggling to sit for so long in church because of the back pain it caused. Now it also causes issues like incontinence and your legs will lock up and you’ll fall. Pressure your parents to get you into a pain specialist who can help, the nerve damage you have from it isn’t doing you any favours. Sadly, there isn’t a cure and it’s an area often overlooked by medical research. But physical therapy is helping as is pain meds (when your doctor is willing to prescribe them that is, but that’s another story) and something is better than nothing.
It's also okay that “thoughts and prayers” never seem like enough.
Religion is a big coping method for your family and their various rare diseases (Mom will get diagnosed with EDS and POTS, so will your middle sister, and your youngest sister has POTS) but it doesn’t need to be for you. It’s probably your neurodivergence if you had to guess, but something about needing proof is a big deal to you. Community is your coping mechanism. Having friends with rare diseases and other disabilities, even if it’s not Marfan, is a huge help to you and your journey. Therapy also helps, but something about people who truly get it on a personal level is so very important to you now. The internet friends your parents rag you for having are more important than you might think originally.
Your sense of community from having friends with rare diseases also leads you into being able to be an effective advocate. While a lot of your advocacy journey starts out with your developmental disabilities (That’s autism and ADHD!) you go on to work in rare disease spaces with organizations like Young Adult Rare Representatives which connects you with speaking opportunities. You love being an advocate and getting to share your story, it’s a long one, but it’s okay that there are days when being an advocate and positive about your disabilities is hard. Being disabled is hard, especially with the complexities of your health you have going on.
Right now, you’re on 14 medications and seeing a doctor or therapist of some kind three times or more a week. That’s hard, and it’s okay it’s hard. That’s what your community and therapy are for.
Overall, it’s okay that you’re disabled. There will be days where it’s hard and days where it’s easy. Right now, it’s hard, but that’s okay! You’re a growing boy, even if you’re 21. Growing and changing is part of life, and that includes the regression that can happen because of disability, but it also includes the joy of community and resilience that comes from being disabled.
Maddox Hathaway
Socials
Instagram: @maddox_away
LinkedIn: Maddox Hathaway