I pretend I’m okay. Pain is my usual. Tired is my always. I smile to hide my reality.
I pretend I’m okay. Pain is my usual. Tired is my always. I smile to hide my reality.
Hypermobility, chronic fatigue, circadian rhythm sleep disorder, chronic migraines, TMJ, complex PTSD, autism, ADHD, and dyslexia. Brain fog, memory loss, low mood—and pain.
My daily reminders:
“As a neurodivergent individual, I experience each of my diagnoses and the symptoms that come with them differently. I don’t always verbalize my pain, partly because I’ve become so used to it. Instead, I’ve built a routine around managing my symptoms while getting on with everyday life as best I can.”
“Organizing and taking the multiple medications I need is quite a big feat in itself, because I have to take them at different times and in different amounts. My memory is so poor that I forget a lot, which is bad.”
“I’m hypermobile, likely due to my Ehlers-Danlos syndrome, which creates constant daily pain. My first subluxation happened when I was 14, drying a plate in the kitchen. Something popped in my wrist. I called the doctor to tell him what had happened, but he brushed off my concerns. “He laughed on the phone and said, ‘That’s impossible. There’s no way you could have done something that simple and it would hurt.’”Now, I can have a subluxation several times a day.”
“I have a lot of pain in all my joints. I get splints in my shins, my knee gets swollen, and I get fluid on it. It clicks, grinds, and locks. I roll on my ankles constantly, and they feel tender and achy a lot.”
“But I try to meet life anyway, when my symptoms permit it. I go on trips with my family. I meet friends for lunch.“Whatever I do, I have to choose to do it regardless of the pain I’m going to be in—because I’m going to be in pain either way. But if I don’t make the conscious choice to try and go out and do things and enjoy my life as much as I can, then all I’m doing is living my life in pain.”
“But with each activity, there’s a payoff. I have to weigh up the energy mentally and physically, and figure out if it’s worth going out. I still have to live my life to some degree. I often end up crashing for two days after I go out and do something because I’m tired. I’m in more pain than I was before.”
“There are times when the pain is so bad that I’ve been confined to my home. I get food and medication delivered. My isolation is at its peak when my circadian rhythm sleep disorder kicks in—leaving me awake when everyone else is asleep, and asleep when everyone else is awake. When my sleep disorder was at its worst—and for the last three years, it has been—I would often go days, even a week, without talking to or seeing anyone.”
“When my sleep disorder was at its worst, I had two companions who stood by me: my two black cats. Maurice and Clarence became my lifeline. I got them the day after moving into my flat on April 1st, a date that suits them for their mischievous nature. They were kind of my only connection or company for a very long time.”
“I constantly question the validity of my own pain, partly fueled by dismissive remarks from doctors, and partly because of my young age and the invisible nature of my conditions. It seems like everyone else my age is fine, and I’m made to feel maybe it’s not so bad. I feel like I’m overdramatising my pain.”
‘Well, it’s not the most severe end of the spectrum.’ ‘What you’re describing sounds unlikely.’ ‘But you seem fine.’ ‘Well, you walked into your appointment.’— Things I’ve been told by doctors.
“During the Pain Project, I found ways to make my pain visible by using techniques like writing with light. For me, these images represented tangible evidence of my invisible reality. I was able to feel something I had seldom felt throughout my medical history: validation.”
“I can look at it and go, ‘Oh yeah, that is real,’ because I put it into something solid that I can see as well. That validates it. I am allowed to feel upset. I feel pain. I see it too, because a lot of times you’re either told it’s not that bad or are gaslighted into thinking it’s not there, that it’s in your head.”
“I had over 50 medical appointments last year—hospitals, physiotherapy clinics, and GP surgeries. The sheer volume of medical administration my conditions require is overwhelming for someone enduring chronic pain.”
Don’t question why I don’t smile more often! Don’t question why I’m too tired again! Don’t question why I “look ill” again! Don’t question what I do with the little energy I have.— Extract of a poem by me.
“My experience highlights the need for greater understanding of invisible chronic conditions, particularly in young people. Try to be understanding. If someone says something, they’re not just saying it for attention. It’s because it hurts. Just because they don’t have a diagnosis, or they’re young, or they ‘look healthy,’ doesn’t mean they are.”
“My pain isn’t just limited to my body. I feel it in my face too—especially my jaw.”
“You can’t ignore the pain when it’s in your face. It’s not the same if it’s in your leg or your arm. It’s much worse when it’s in your face. Because it’s even affecting how you’re communicating, how you’re seeing.”
“It’s the hand I was dealt.
I am not just the pain.
I am more than my pain.”
— Extract of a poem by me.
Dear Jaw,
You hurt me
You cause me much difficulty
You make my life harder
You take away the enjoyment of food
You make me cry
Dear Jaw
It’s not your fault
It’s the way you were made
It’s not deliberate
It’s not my fault
I have no control
It’s the hand I was dealt
I am not just the pain
I am more than my pain
