Katy’s daughter suffers from Juvenile Idiopathic Arthritis or JIA. She is supported by the charity iCan Ireland and in a bid to raise awareness of her condition and help others suffering from this incurable disease, she asks you to read her thoughts and share with your friends and family. There’s so much more to my daughter’s diagnosis of Juvenile Idiopathic Arthritis than the name suggests:
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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 whom 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 daughters 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 knows. Maybe this is why they don’t stop to ask about 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 why 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 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 loudly that ‘NO it’s not just arthritis, it’s so much more’.
Three years ago 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 part of.
To date my daughter has had inflammation of her heart, lungs, liver, spleen, lymph nodes, skin, joints and eyes. She gets spiking temperatures of 104 degrees, 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 and 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 for ever? How do you explain that no it’s not just arthritis when people don’t want to hear? How do you explain that it can kill you? How do you explain all this to those that 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, they’re pleased she’s better, they’re pleased she’s not on any medication she rarely corrects them. She doesn’t tell them that today she will have taken 17 tablets and one injection just to function and survive.
She doesn’t tell them about her massive achievements of which she’s so proud but to others are so routine. 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 maybe just stop and listen to her so you can understand what her diagnosis really means.
If you or a member of your family has been affected by JIA, iCan can help put you in touch with resources. Or if you want to show your support donate here to help our charity of the year.