Katy’s daughter lives with Juvenile Idiopathic Arthritis, or JIA. She is supported by the Irish charity iCan Ireland, and in a bid to raise awareness of her daughter’s condition and help others facing this incurable disease, Katy shares her thoughts here. She hopes you’ll read them and pass them on to family and friends.
There’s so much more to my daughter’s diagnosis of Juvenile Idiopathic Arthritis than the name suggests.
There are many things I wish I could change about my daughter’s chronic illness, but up there at the top of the list, along with a cure, is that people would understand her diagnosis and its impact on her.
Over the years, I’ve watched my daughter slowly give up explaining her condition to others. At first, she tried. She wanted people to understand because then they would know her. There is no distinction now between her illness and her — it is all part of who she has become.
Friends, relatives, teachers, doctors, health professionals — they all think they know about her illness, but most don’t. They just don’t get it. I watch my daughter’s face fall as yet another person presumes they do.
I watch her face fall as they get it wrong. I watch her face fall as they offer well-meaning but misguided advice. I watch her face fall as they offer magic cures, magic diets, and tell her about the damage her medication is doing to her body.
If they had only stopped to ask her, they would know the damage done by these words and their ignorance. They would know those medications saved her life and keep her here with us today.
More than anything, I wish they would just take the time to stop and listen to her. If they did, they would understand her. They would understand the fear and the worry she lives through. They would understand the impact of her disease on her body and life. They would understand why sometimes she finds it hard to engage with others. They would understand the difficulties she encounters and the struggles she has — but over the years, few have taken that time.
My daughter has a rare and severe auto-inflammatory condition known as Systemic Juvenile Idiopathic Arthritis, and an even rarer, life-threatening secondary condition known as Macrophage Activation Syndrome.
Unfortunately, there is one word in that diagnosis that everyone recognises. Maybe this is why they don’t stop to ask what the other words mean. Maybe this is why they think they know all about it. Maybe this is why they offer advice.
Maybe it’s the reason I have to explain, time and again, that “No, it’s not the same disease as your granny has.”
The first time I heard “At least it’s only arthritis” was just hours after my daughter had moved from the Intensive Care Unit to a general medical ward. I was shattered — emotionally and physically — and trying hard to adjust to the fact that I had nearly lost my 13-year-old daughter.
All I could do was smile and nod in the direction of the well-meaning person who uttered those words, when all I wanted to do was shout that “NO, it’s not just arthritis, it’s so much more.”
In the space of two weeks, my daughter went from an active and healthy teenager to fighting for her life in the Intensive Care Unit at a children’s hospital miles from home. Her condition causes widespread inflammation, of which arthritis — inflammation in the joints — is just one part.
To date, my daughter has had inflammation of her heart, lungs, liver, spleen, lymph nodes, skin, joints and eyes. She gets spiking temperatures, rashes, bloods that are off the scale, chronic fatigue and daily pain.
When her inflammation spirals out of control, she develops Macrophage Activation Syndrome, and we enter the terrifying unknown of possible multiple organ failure. The impact has been huge, both physically and mentally.
As a 13-year-old, how do you adjust to nearly dying and a new diagnosis? How do you live with the knowledge it could happen again, and that life and your expectations for it have changed forever? How do you explain that no, it’s not just arthritis, when people don’t want to hear it? How do you explain that it can kill you? How do you explain all this to those who won’t listen because they think they already know?
My daughter has become a master of disguise — an expert in concealing her feelings and hiding her thoughts from others. She knows people just don’t get it, that most aren’t interested in discovering what her chronic illness actually involves.
When people tell her she looks well, that they’re pleased she’s better, that they’re pleased she’s not on any medication, she rarely corrects them. She doesn’t tell them that today she will have taken numerous tablets and an injection just to function and survive.
She doesn’t tell them about her massive achievements, which to others seem so routine but to her are hard-won. That today she managed to write, to walk, to dress, to shower, to brush her hair, to cut up an apple. That today she managed to get out of bed and complete a whole day of school. That today she managed not to cry with pain, fatigue or sadness. That today she managed not to panic about the pain in her chest.
That today she stayed awake. That today she managed to sleep. That today she didn’t imagine the worst.
There is no cure. This is her life, forever. So please, next time you see my daughter — or anyone living with a chronic illness — maybe just stop and listen, so you can understand what their diagnosis really means.
If you or a member of your family has been affected by JIA, iCan Ireland can help put you in touch with support and resources.
Frequently Asked Questions
What is Juvenile Idiopathic Arthritis (JIA)?
JIA is a chronic autoimmune condition that causes joint inflammation in children and teenagers. Some forms, like Systemic JIA, can also cause inflammation elsewhere in the body — including the heart, lungs, liver, skin and eyes — not just the joints.
Is JIA the same as adult arthritis?
No. While the name includes “arthritis,” JIA in children — particularly systemic forms — can involve much wider inflammation and more serious complications than the arthritis older adults commonly experience. It’s a distinct condition, not a childhood version of the same illness.
What is Macrophage Activation Syndrome?
It’s a rare but serious complication that can occur with Systemic JIA, involving out-of-control inflammation that can affect multiple organs. Families living with this diagnosis describe it as a frightening, high-stakes part of managing the condition.
How can I support a child or family living with JIA?
Take the time to listen rather than assume you understand the condition or offer unsolicited advice about diets, cures, or medication. Organisations like iCan Ireland offer information and peer support for families affected by JIA.
Related Articles
- Supporting Your Child Through a Chronic Illness Diagnosis
- How to Talk to Children About Invisible Illnesses
- Building a Support Network as a Parent of a Child with Additional Health Needs
Save This for Later
If Katy’s story resonated with you, consider saving it or sharing it with someone who might need to read it — whether that’s a friend, a teacher, or a family member trying to understand a loved one’s chronic illness.
Get Weekly Ideas from MyKidsTime
Want more real stories, parenting support and family ideas delivered straight to your inbox? Sign up for our free newsletter — it’s full of ideas, competitions and offers, and it’s completely free.
