I read an article this morning in the Washington Post that really took my breath away. The piece in question, "Why I hid my happy, healthy daughter's medical diagnosis from her for as long as I could," really struck a nerve with me.
The post is penned by a parent who learns that her child has celiac disease. She debates whether or not she should tell her child, ultimately deciding to hold off, stating that she "didn't want to deal with it. Aside from [her] own self-pity, it felt awful thinking about how [her] daughter would have to be hyper-aware of her health and diet at such a young age."
Thankfully, the child is ultimately informed of her celiac disease diagnosis. But how could it be possible to even debate whether or not to share that information? If your child were diabetic, would you not tell them? Or if your child had lupus, would you not tell them? Why is celiac disease different?
The answer, I am sure, is because the child in question appeared "healthy." However, being asymptomatic does not mean that you are okay. Celiac disease is an autoimmune disease, it never goes away. Not having symptoms means nothing; there is still immense damage being done. So how can it be that a parent would knowingly put their child in danger's way? How could a parent possibly knowingly compromise their child's physical, mental, and emotional health just to absolve themselves from some parental guilt?
Before I go any further, I would like to note that I of course understand wishing your child did not have celiac disease. But that does not change the reality that they do have it. And you have an obligation as a parent to disclose that to them, to educate them, and to keep them safe from harm.
Instead of projecting your own worries and guilt, celebrate the fact that your child has an autoimmune disease they can actually actively have some control over. Celiac disease can be absolutely devastating, but only if you ignore it and if you associate it with guilt. Stigmatizing the disease does no one any favors, it sets the tone for the child to view themselves and their disease negatively, to apologize for it, to lament it, to not own their bodies and not own their choices.
I speak only from personal experience, and welcome differing views, but for me celiac disease is only as hard as other people make it. I am an upbeat, optimistic, and grateful person; I don't feel slighted that I have to be gluten-free.
If I don't feel that, and I don't project that, then why do so many other people feel that it is some terrible burden? It's not, and it is not fair to subject us to your projections. Being gluten-free means that we, as people with celiac disease, are healthy and autonomous. Being gluten-free is freedom for us. Those of us who are lucky enough and can catch our disease sooner rather than later can lessen the repercussions; we can break free from the burdens of health issues like anemia, depression, osteoporosis, cancer, and other autoimmune diseases that go hand in hand with celiac.
Believe me when I say that I don't resent my disease. I love it. I am so grateful that everyday I can live freely without medication and without the imagined burdens that others project. My family, friends, and boyfriend support me, and that in itself is something to be grateful for. My complaints are less about celiac disease itself and more about the world in which we live:
I resent that there is no legislation requiring pharmaceutical companies to disclose the presence of gluten in medication.
I resent that food products can be labeled gluten free and not actually be safe for celiacs.
I resent that there are individuals out there who see being gluten free as a choice, as something I can turn on or off.
And I truly resent that a parent would ever even consider withholding medical information from the child that it so directly affects, visibly or not.
Having celiac disease itself is not difficult but operating in a world that does not fully recognize or understand the disease is.
My aim in writing this response is to educate. It is to send a message that it is NOT acceptable to withhold critical health information that is quite literally life or death just because YOU don't want to believe, or come to terms with the fact, that it is relevant or real.
I welcome you to share your thoughts and reactions below or to me directly at hannah.crane@nyu.edu.