To Parents Whose Children Just Entered the World of Chronic Illness
You will be OK, your child will be OK. Life is going to be a bit complicated and definitely harder. It’s not going to be what you imagined, or what it previously was before your child became ill. But that is OK. Just because our lives are a bit different doesn’t mean they can’t be just as extraordinary.
Doctors aren’t always right. They are not gods. If you feel something isn’t right, chances are, they aren’t. This is a lesson my mom and I had to learn the hard way. If your child isn’t getting the care and help they need, don’t hesitate to get it from another doctor. It might seem intimidating. Perhaps you’ve never had an experience where there was a problem a doctor couldn’t find or fix, but that doesn’t mean you shouln’t take your child’s care into your own hands. And listen to us when we say something isn’t right. Only we can truly know what’s going on in our bodies.
Encourage your child to advocate for themselves, whether it be to family, doctors, peers, nurses, teachers or even strangers. This skill will serve us immensley as we navigate the life of being chronically ill. When I started advocating for myself, I felt much safer and ultimately, my life got even just a bit easier.
We will have good days and bad days. Please don’t blame us for our bad days and please don’t expect all our days to be like our good days. We have limitations. We won’t be able to do everything we used to, no matter how much we wish. Please don’t be frustrated with us for this. We are already frustrated enough at our own bodies.
Pain is a hard thing to live with. Please be gentle with us. We may not always be as happy or enthsiastic about things as we used to be but thats just because sometimes, it’s simply exausting to exist.
Make sure we know that you love us and are there for us. We are scared, you are scared, and this will be a time where we will need to lean on each other more than ever.
It’s OK to be in denial, both for you and your child. It’s OK to long for the days when life was just a little easier. Chances are your life got somewhat turned upside down on the onset of your child’s illness. You’re grieving your former life and denial is a part of that. We are probably in a bit of denial as well. This gets easier as time goes on.
Help your child accept their illness. It is also important for you to accept it. This doesn’t mean that you are happy or even OK with the illness — it simply means that this is your life and now it’s time to create your own sunshine.
Your child will likely joke about their illness after they’ve accepted it. Laugh with them. Laugh at their bruises and their dizziness and their medications; after all, if you don’t laugh, you’ll cry.
You will make mistakes. You will say the wrong thing. You will take us to the wrong doctor. You will likely feel like the bad guy at one point or another. But with time you will learn what words to avoid, how how to sniff out bad doctors from a mile away, and that you are doing the right thing even if you feel like the bad guy. You will learn.
You and your child will inevitably run into ableism and judgement. You can’t controll the world; there are simply ignorant people out there. Just reasure us that other people’s veiws and opinons of us do not define us. You may hear judgements from the people closest to you, the ones who love you and your child most. This is unfortunate, and all you can do is try to educate them and know that it doesn’t necesarily mean they love you or your child any less.
So welcome to the world of chronic illness — a world no one should have to be in. Here you will take on many roles: a cheerleader, a hand holder, a pharmacist, a hair washer, an advocate, a nurse, a superhero. Here, we laugh about the most somber of things, we deal with ignorance on a daily basis and it only makes us stronger. We face pain head on every day. It just becomes a fact of life. I am here to tell you that you will make mistakes, but you will learn. You and your child are a team with immense stregth between the two of you. And in the end, everything will be alright. Your hard life will be magnificent.
Sincerely,
A chronically ill child whose mom is a goddess
Follow this journey on As Ellie.
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Ellie is a 16-year-old with Ehlers-Danlos syndrome among a few other comorbities. She is living life from bed and a wheelchair, and making the most of it. She can, and will, take any opportunity for an impromptu dance party, especially in the hospital. She is just here to bring love and light into the world.
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