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 Chelsea Wong! Chelsea lives with Lupus and Lymphocytopenia.
This is Chelsea's LETTER TO MY YOUNGER SELF!
Dear Younger Self,
You were once young, fearless and free. You were quiet, curious and passionate about helping others. But things change and this is what I want to share with you. You’re going to be diagnosed with lupus at the age of 14 and this will change your life. It brings you a new beginning to a new season of grief, pain but also opportunities to grow.
You were quite bright, excelling in school and also had time to enjoy many extra-curriculars, such as art, table tennis, chess, badminton, ice skating, horse riding, the list goes on. But soon, you will struggle academically as you learn to face new challenges in concentrating, managing fatigue levels and brain fog. You end up just playing table tennis as that was your favourite out of all of them and you feel blessed if you even have the time to enjoy your creative pursuits.
I wish I could tell you it gets easier, but unfortunately, I am going to have to tell you about the curse that has been cast upon you. The start was extremely scary. Being told something you hardly understand whilst being completely out of it is daunting and you fear you are going delirious. Your health will fluctuate in which you have no control over, and I know how much you like having control over your actions. You could be doing everything right and your body can still burden you with another flare-up which will cause you extreme frustration and make you wonder where it went wrong and how. And there will be times when you will rarely be at baseline, just jumping from one flare-up to the another, where it’s this cycle of this ongoing frustration.
Ever since being diagnosed, you will go through some of the worst periods of your short life filled with constant suffering, agony and pain. You will spend a lot of time in and out of the hospital for blood tests, check-ups and infusions. You used to have a massive fear of needles, but your time spent there was already wasting so much time in your life, you are able to get over it and just let professionals do their thing. You will be diagnosed with more than just an autoimmune disorder but also a blood disorder (lymphocytopenia) and hypermobility. There’s a lot you have to give up, part of your childhood will be lost and you may even sink and have to drown parts of you in order to progress.
With this constant toil living rent-free in your body, your mind will wander to dark places, you learn to suppress your feelings and there are times you will feel you really can’t cope. Something as traumatic as being diagnosed with a chronic condition at such a young age can really do a number on your mental state. You start asking the ‘what if’ question, imagining what life could have been, but you can’t. You can’t remember most of your childhood pre-Lupus and you will struggle to unlock those memories of when you were ‘healthy’. This is where the grief kicks in, making you wonder what you could have accomplished without such a burden on your body, all the things you can no longer do or will have to miss because you just physically can’t do it. And you learn to live without the FOMO, thriving on the present moments instead.
It probably doesn’t help you will end up losing faith in the NHS, developing a massive mistrust in doctors and their ability to treat you like you deserve to be treated. Most medical professionals you meet show lack of empathy, are careless in what they are doing and may even treat you more like an experiment than a person. You will face incidents of medical gaslighting where doctors will not believe your symptoms, tell you it’s in your head or “it’s not that bad”. Instead of helping, they just tell you “to rest”, “to not think about it” or “let’s wait to see if it gets better on its own”. You will go through a lot of medical trauma. Many of these ‘professionals’ will mess up, some failing constantly to do a blood test, some giving you infection through your hickman line and portacath or telling you in an open surgery they are struggling. You will repeatedly see medical professionals not be able to do their job properly and you wonder what the point of even going when you hate going to the hospital. You start to wonder what your life has become and when it will get better.
But guess what? You persevere. Your stubbornness has helped you survive the worst of times, adapt to this threatening change and instead of a strain, use it as a motivator to see the strengths that lie within you, helping you continually move forward.
You never let your condition stop you from reaching our fullest potential, you become as proactive as your body allows and you live.
Through having lupus, you’ve learned to change your days according to your mood, pain and energy levels. You gained insight in where your strengths lie in caring for others, being creative and making connections. You learn your weaknesses are in overdoing mentally and overstraining physically which becomes overwhelming, making your condition worse.
Your perspective will change, your mindset will shift, and the power of positivity helps you get through it. You’re a go-getter, a high achiever and a perfectionist which makes you dependable, motivated and goal-oriented as you work for what you want. You will achieve so much. With doubts from people surrounding you about being able to attend university, you graduate with a first-class honours, putting the haters to rest. You join many societies, be part of their committees and create valuable relationships. You volunteer for fabulous organisations, which you massively enjoy, like Cards for Bravery where your empathy for people can blossom, Befriend a Child, being a student mentor and taking notes for disabled students so they have the same potential to do well in their university career.
People is what gets your blood flowing. You thrive on developing loving relations with other people, finding extreme happiness in being around them, helping them and spending time with them. You allow yourself to let your creative juices flow, where as a distraction from all the craziness that comes with life living with a rare disease, you reminisce on your old hobbies, refind your passions in creativity and rekindle them. You pick up reading again, making art again, playing table tennis again. You learn to crochet, make stickers and write in a different way than you used to before. You become an advocate which becomes extremely important to you. By using your words and experiences, you spread awareness of important issues that mean a lot to you - chronic illness, racism and sexuality. Most importantly, you live your life to the fullest, take any opportunity that you can manage and you have fun.
You become someone amazing, with a spark in your eye to constantly be doing, not just for yourself but for other people. You will learn a lot through having lupus and even spending so much time in hospital makes you really think about your life, makes you more realistic with your goals to find out who you really are with such an overbearing weight on your shoulders. You become tough, you become brave, you become strong. You learn to advocate yourself in appointments to be heard, spread awareness of the challenges you will face and you learn talking helps you express how you feel, with another outlet in writing.
You start to realise not many people will ever understand what you go through on a daily basis, but you don’t want them to. Whilst you will meet some of the best people in your life, you will also become part of the disabled community, making friends with people in similar situations and can find a way to relate to each other and celebrate each other. It is these relationships that are a major factor in who you are today. How they treated you, helped you, supported you all has an influence. They keep you going and remind you that whilst there are restrictions sometimes, there are still so many things you will accomplish and ones you already have. You really blossom into a wonderful person with so much care in your heart and strength to do anything you put your mind to. You will help people see the world in your eyes and make an impact. I’m extremely proud of you... and it's not over yet.
Socials
Instagram @_chelseawong_ @thechelseainfusion
Etsy @wongstudios
LinkedIn @chelsea-wongg
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