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 entry comes from Avalon, who is impacted by pure autonomic failure (PAF); hypermobile Ehlers Danlos Syndrome; pseudoangiomatous stromal hyperplasia (PASH) tumours and chronic Inflammatory Demyelinating Polyneuropathy.
This is Avalon's LETTER TO MY YOUNGER SELF!
Dear younger self,
Like everyone else on this planet, you don’t know what the future holds for you. But I do, and I want to reassure you that you will feel happy again despite all the challenges that lie ahead.
I urge you above all to continue to believe in yourself, advocate for yourself and keep your chin up even when you get knocked down by professionals who tell you your pain and symptoms are all between your ears. You are not crazy. Don’t let anyone tell you otherwise.
Despite having anxiety, depression and autism, these very real and very physical illnesses are not in your head like so many doctors will tell you.
Your health will continue to deteriorate. What started as some tummy pain when you got your first period will grow into severe disease in your pelvis which will need to be operated on several times. The aching of your joints aren’t just ‘growing pains’: you have Ehlers Danlos Syndrome. And those dizzy spells and fainting? They’re not normal, either. You have a one-in-a-million disease called autonomic failure, which affects your whole body and brings on a host of other illnesses. It’ll all feel rather dire at first, because there is no cure for any of your rare and chronic illnesses. Management strategies do exist though, and you’ll find your ways to cope with the diagnoses and symptoms. You’re going to be an eventually proud wheelchair user. I know that anything remotely medical scares you right now, but you’ll learn to embrace the aids and unlearn that internalised ableism. Moreover, you’ll overcome your fear of doctors and hospitals, and will work through the medical trauma you’re going to develop.
Years of medical gaslighting will have to be endured before you get answers on what’s happening with your body, but you will eventually find a wonderful specialist medical team who hears you, believes you, and is able to diagnose you accurately. So for now, even when your own parents tell you you’re being ‘dramatic’ and it’s ‘just anxiety, you need to relax more’, be patient and keep fighting for the answers you deserve. Of course you deserve to be believed by them too, but try and understand that they’re only listening to what the doctors are telling them.
Even with your illnesses and struggles, you are still so loveable. There is so much joy, compassion, and unconditional love coming your way. I know you’ll find this hard to believe, but you’ll have very happy and fulfilling relationships, including romantically, in which people don’t treat you like the burden you often feel you are. It’s a feeling you’ll continue to struggle with for many years to come, and that I’m still figuring out now. Remember to take a moment each day to relish the feeling of how loved you are, and push those doubts away when they rear their ugly heads.
Being disabled does not mean you are less lovable.
That said, in your roughest years, you will lose more friends than you gain. It’s going to be a heartbreaking, gut-wrenching process to lose people you thought you’d have by your side for your lifetime. But the friends you gain will be beyond precious, and you know that you can truly trust them and that they accept you for who you are, how you are. You’re not (and, I hate to break it to you, never will be) one of the ‘cool kids’ at school. But you will learn to embrace who you authentically are. There are so many more important things than fitting in at school, than wearing the latest trends and listening to the Top of the Pop chart. Please be more confident in who you are and don’t shy away from your quirks. Horse-girling will remain a beloved part of your identity (even when you are a wheelchair user and can no longer ride), and you’re going to learn that you have autism which will help place the puzzle pieces. You’ll make a great group of close friends, both at school and university as well as beyond, who embrace you for exactly who you are, and who are just as whacky. A whole chosen family you can’t even begin to dream of currently are waiting to embrace you with arms wide open, support you, laugh and cry with you, and be there for each other.
In meeting other disabled people and joining organisations, such as the Dutch Ehlers Danlos Society, you’re going to form a community of people who truly get it. You’re also going to meet an online community through advocacy work on Instagram. One of your best friends will be someone you meet at a medical rehabilitation centre, and she has Ehlers Danlos Syndrome too!
The solidarity you find in fellow disabled people is going to fuel you with strength and arm you with strategies to help live life to the fullest.
Afterall, your favourite saying is and always will be “every cloud has a silver lining”. Keep living by this proverb. Yes, your illnesses and associated experiences are going to rip away so much of your potential—you’re no longer going to be able to walk much, cycle, ride horses, study full-time, work or live pain-free. But you’re also going to gain so much from those experiences. Not just friends and a community, but an even deeper passion for writing, a new part of your identity as an advocate for disabled rights, deeper love for the little things in life, new hobbies and unique perspectives. None of those detract from the pain and suffering you’re going to experience, but there will be so many silver linings in spite of that. Your future is equally full of joy and love. You’re going to live in rural Canada on a cattle ranch, you’ll move to the Netherlands, travel to New York with one of your best friends, become a published author, study at university, lead a community, spend lots of time with animals and grow. Maybe you’re already figuring this out by reading this, but you’re going to realise that the true joy in your life doesn’t come from your achievements but how you spend your free time. When you find out you’re unable to work or study full-time, you’re going to think it’s the end of the world. Plot twist: it’s really not. Your worth doesn’t depend on what you can do, how much money you make or how good your grades are (on that note, you’re going to ace your GCSEs and A-Levels whilst regretting how much you ran your body into the ground to do so). Remember that often.
Knowing you, you’re likely feeling incredibly anxious and like the future is all doom and gloom whilst reading this. You’re stronger than you give yourself credit for. Even in the darkest of days physically and emotionally, you will get through and you will feel joy again.
Despite the challenges you’ll face, your heart is going to feel ready to burst with love and joy throughout your early adulthood.
It’s all a lot to process, and though it breaks my heart to warn you, you’re going to have really hard days, weeks and months—physically and emotionally, too. One thing I regret doing when I was younger is bottling all those struggles up. Please go to therapy and talk about how you really feel. You shouldn’t have to carry the weight of what’s happening in your world on your own shoulders (if anything, that’s asking for another dislocation). Struggling is nothing to be ashamed of and neither is needing help to process all those feelings and medical trauma. Grieve what you’ve lost and don’t shy away from those big, scary feelings. Allow a psychologist to help you find coping mechanisms and understanding of everything.
With love,
Avalon
P.s. you eventually get your very own (medical service) dog!
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