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.
In this edition, the letter comes from another member of our RARE Revolution family, Charlotte Cooper. Charlotte lives with Rheumatoid Arthritis which is a long term condition that causes pain, stiffness and swelling in the joints.
This is Charlotte's LETTER TO MY YOUNGER SELF!
Dear young Charlotte,
There is so much I want to tell you,
You are going to face some real highs and lows,
But I promise, everything you’ll get through.
There’s going to come a time where you feel a little broken,
But I need you to know that it’s not better unspoken.
I know it’s confusing, and you’ll understand more in time,
But for now, I’m going to do my best to explain to you in rhyme…
Your childhood years will shape you more than you know,
Taekwondo, swimming, and camping,
So full of energy, and always on the go.
As a teen you’ll start to notice some aching pain,
Different from anything before, it not like a sprain.
But you’ll tell yourself “there is nothing the matter with me,
I am young and healthy; I am fit as can be.”
As the years go on you push the pain to one side,
Continuing life as you know it to be,
Nothing coming between you and your pride.
But soon enough you will come to see,
That no painkillers can relive the ache in your knee.
And your will to go on and forever persist,
Will only cause you more swelling in that painful wrist.
Soon your secret suffering will lead to many silent cries,
Life is becoming a struggle now,
You are experiencing more lows than highs.
It is time now that you tell someone and put your pride to bed,
You tell your parents everything and here is what they said:
“Why didn’t you tell us sooner? We could have done so much more,
Let’s get you to a doctor, let’s find you a cure.”
Now the GP that you see will tell you it’s growing pains,
“Diet, yoga, and positivity,
That is all you need”, he explains.
And so, you continue life as you are told it should be,
Doing your best to keep going and live life carefree.
But taekwondo, swimming, and camping are now few and far between,
The swelling in your joints keep you prisoner behind a screen.
Dreams to be a taekwondo instructor are now long gone,
But perhaps “a reader, a writer, or publicist?”
Off to university at the age of twenty-one.
Here you make more friends, and your passion for life reignites,
New ambitions, goals, and a career set in sight.
You find a love of books: classics, or the new bestselling,
A subject you can axcel in, although perhaps not with spelling!
The smile now is genuine, but the pain still non-stop,
“Diligent, ambitious, and bubbly”
But still suffering behind a desktop.
A fall in the shower sends you back to a GP,
“What’s wrong with your hand? There’s swelling there I see.”
A discussion of your symptoms and pain over the years,
It all starts to make sense now; it was never silly fears.
“I am sending you to see a rheumatologist”, they will say.
Surprised, nervous, and grateful,
Emotions were abundant hearing those words that day.
Fast forward three years and studying your master’s degree,
Now working a publishing position in medical advocacy.
Independent and camping again, I promise it’s true.
A rheumatologist and physiotherapist have truly helped you.
There are going to be tough days where you nearly give in,
Lonely, sick, and stuck indoors,
a life of pain, swelling and red skin.
I won’t tell you it’s easy but soon you’ll learn to embrace,
That you don’t need to compete with anyone; do life at your pace.
You know now you have RA, and it does not define who you are.
Please rest assured young Charlotte, you really have come so far.
Love, Charlotte x
Written by Charlotte Cooper as part of our "Letters to my younger self" series.
To get involved with the RARE Youth Revolution, and this series, you can email our youth coordinator James Brooks at firstname.lastname@example.org