Perspectives of The Pompe World

“She looks so normal.” I hear.

I know that. Thank you? I’m never quite sure how to respond. Do I take this as a compliment or defend her deviations?

This phrase conflicts comfort and discouragement. We hope for our children to stand out in ways that do not cast a spotlight on illness or disability. We don’t want that to be a defining attribute if we have any say in the matter. So yes, I’m grateful that she “looks fine.” Kids can be cruel and I hope that this will spare my child the unwanted attention.

You know who else is cruel?

Adults.

For some reason, people are so much more empathetic to the limitations of a child. Adults are not as often “teased” but are often dismissed, discredited and misunderstood. The man who can walk without a device is using a handicap parking spot and will feel the side-eyes. The woman who expresses trouble taking a few stairs will be counseled on her BMI before offered diagnostic workup.

They are called lazy, hypochondriacs, attention seeking. They are whispered about and criticized.

They look normal.

They don’t look sick enough. They feel obligated to explain their disease/disability so that they are treated with empathy and understanding. All so you’ll take their hardships seriously. So you won’t whisper, stare, and make accusations. The hard truth is, many people will not show empathy without a blatantly obvious presentation of a struggle.

Pompe Disease can appear to be an invisible illness for many. While I have my fingers crossed for what life may look like for my child as an adult, I also fear for how she may be treated if she doesn’t look “sick enough.” Will they take her seriously? Will they judge her? Will they tease her and talk down to her? Will they believe her?

Maybe she will use a device that just might spare her the ridicule. Should I hope for that? Should I have to find relief in physical proof so that she may be spared judgement?

I recently listened to a man with this disease tell his story. This man is typically a bright spot in the community with his positive mindset and passion for awareness. He truly brings encouragement and hope. For the first time I listened to him tell of his struggles with the invisible aspect of Pompe Disease. He spoke of being stared at and whispered about for using a motorized chair at a large amusement park. I wept. I couldn’t believe he had experienced people be so cruel. Is this what my daughter has to look forward to? Will she feel burdened that she “looks fine” but isn’t? Will they stare and whisper about her too? Will they discredit her struggle?

“I hope that people will stop trading empathy for proof of merit.”

I surely hope not. I hope people will stop trading empathy for proof of merit. I hope it doesn’t feel like defeat to hear that she looks “normal” or “fine.” I hope that she won’t need permission to live with the accommodations that would be assigned to her situation.

I just hope to remind people that there are humans whose bodies fail them in ways that may not catch your eye. These people are trying to live their life the best way they physically can and empathy goes a long way.