Six more years
A condition built over six long years,
triggered by emotions, tears.
It makes me feel like I’m to blame.
Am I the cause of all this pain?
I fight and feign a fake facade –
put up an isolating guard;
I don’t want anyone to know
my darkest thoughts, when feeling low.
Fifteen treatments to no avail,
leaving me weak, making me frail.
I live in fear.
I hate this.
Desperation.
I dismiss
the successes I reach because all I feel
is the pain in my skin, I pray that I heal;
make it soon,
make it quick.
This time,
make it stick.
I can’t do six more years
of this excruciating pain and tears.
Daily upset, mentally drained.
I pray that I can stop this pain
and maybe one day be set free
from guilt and accountability.
I yearn to be rid of this beast,
Or not the Burning Nights* at least?
I wish to sleep for alleviation
from the agony of this creation.
I can picture it now: severing the ties
to catalyse its final demise.
To be pain-free, I feel such hope –
I’ll scale this perpendicular slope.
Submitted as life’s marionette,
Any feelings are to be suppressed
To continue: sleep, eat, reset.
I am a victim of CRPS.
Is freedom not too much to ask?
It seems like such a simple task:
The power to act, say as you please.
But freedom is
not this disease.
I can’t do six more years.
I beg you, let me close these doors,
Otherwise I’ll be
forever yours.
*Burning Nights CRPS is a charity which “works to improve life for those affected by Complex Regional Pain Syndrome (CRPS) as well as healthcare, legal & the public”.
“It’s this debilitating stabbing pain that started in my right wrist. Sometimes, I get it in my feet. I just couldn’t walk, couldn’t move.
It began with something so ordinary—a tag rugby collision in December 2018 when I was 10 years old. I experienced a minor injury to my right wrist that should have healed in weeks, but instead, it rewrote my medical history.”
“I’m 17, and I live in Reading. For the past six years of my life, I’ve balanced meeting the demands of school with managing complex regional pain syndrome (CRPS).”
“When it’s been really bad, burning, I go and sit outside in the cold, in the winter, and it’ll be freezing outside. It’s an attempt at reducing the burning sensation. I’d say the stabbing pain is the worst though. It’s just so persistent and reaches such intense levels. I’ve tried icing it but it just brings more pain.”
“CRPS has rewired my nervous system. Sensations that ought to be ordinary are, instead, amplified messages of pain that flood my brain. A gentle breeze, the lightest touch, even the sensation of my own breathing, on a bad day, can be excruciating.”
“I remember in primary school… I’d be so confused. People would walk past; they wouldn’t even brush my arm, but the air moving with them as they walked past would trigger extreme pain.”
“I can usually feel when a flare is about to happen. At school, it happens up to 10 times a day, but at home, it’s much less frequent. I put myself under pressure at school to live up to the expectations I set for myself.”
“Stress, often caused by my academic and sporting expectations of myself, can easily trigger a flare-up. My symptoms range from internal, invisible pain to others that are painfully visible—like excessive hair growth and sweating at the site of the injury. During a bad flare, my wrist can turn purple.”
“My visible symptoms create further stress, worsened by the fact that I keep my illness a carefully guarded secret, out of a fear of being judged or, worse, not believed.”
“I fight and feign a fake facade—
put up an isolating guard;
I don’t want anyone to know
my darkest thoughts, when feeling low.”
“Daily physiotherapy sessions, X-rays, full-body MRI scans replaced school days in the initial years of my diagnosis. Students were left wondering where I was. One year, my report card for that year was left blank.”
“A condition built over six long years,
triggered by emotions, tears.
It makes me feel like I’m to blame.
Am I the cause of all this pain?”
“For me, CRPS has meant adjusting plans and managing expectations—including the dreams I once held dear, like going to university. “I had very high expectations that I wanted to achieve. It’s just hard as it’s been a bit of a change mentally for me, maybe what I wanted to do with my future is now not feasible.”
“In 2024, the transition to sixth form brought everything crashing down.“Going into sixth form this year was a massive jump for me that I just wasn’t prepared for, and also going into winter made it worse.”“I couldn’t sit my end-of-year exams, which contribute to your UCAS, which they send off to universities. I couldn’t sit them, because I couldn’t write.”
“It’s painful for me to see the impact my condition has on my family. I’m very conscious of how horrific it is for my parents to see… I like to take myself off when I have a flare. I think it must be awful for them because I’m close to them. They’re so helpless in situations like that, they can’t do anything to help their daughter. I think it must be just as tough on them. As well as isolating myself, during a bad flare-up, I bite my finger to avoid making noise. When my symptoms permit it, physical activity also brings me relief. One in particular elevates my spirits: sailing.”
“From a very young age, my family got into sailing, and I fell in love with it and got competitive. I’ve been sailing for years and competing for the last eight years. Sailing just makes me so happy. It’s been limited recently; it’s been up and down with my amount of participation because of the pain. I’m most at ease when I’m on the water. Or on the hockey pitch. It’s funny, because the distraction of sailing and hockey poses as a brief alleviation from the pain sometimes.”
“Over six years, I’ve undergone 15 different types of treatment. In 2023, I traveled to Ireland to try electrotherapy. In May 2025, I underwent scrambler therapy in Germany, which is unavailable in the UK. The scrambler therapy was a breakthrough moment for me. It has greatly improved my ability to write. I’ll go back for top-ups.”
