To My Date Who Told Me I Was ‘Held Together With Duct Tape and Glue’

For the most part, I believe people have good intentions and mean well, but they aren’t always able to find the right words. I’ve heard everything from misguided advice that wasn’t meant to hurt to bluntly being called “lazy.” 

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

So I try to choose my battles wisely and usually ignore these things, but you crossed the line when you told me I was “held together with duct tape and glue.” Whether you meant this as a joke or as an insult, it wasn’t nice and I asked you to stop.

First of all, I have a great sense of humor and a positive attitude — I laugh at myself all the time — but I didn’t find this funny, not even the first time. My disorder isn’t the punchline of a bad joke. It’s not your place to make light of my ordeal — just know that I’m incredibly lucky to be alive.

It was incredibly hurtful and unnecessary to point this out each time I chose to be open and honest about my limitations. Clearly, it would have been more convenient to come up with an excuse or give you no explanation at all. I was never obligated to tell you anything. And then you made me realize you probably didn’t deserve to know the details. You knew I didn’t appreciate it the first time, but you repeatedly told me I was “held together with duct tape and glue,” as though I needed a reminder I have endured more challenges than anyone my age should ever have to.

Moreover, it bothers me you felt the need to point out my body is “falling apart.” I am not broken. I am unbreakable. I was fortunate to walk away from these battles unscathed.

Never mistake one’s openness or acceptance in regards to his or her shortcomings as an invitation to mock a person’s survivorship. In doing so, you’re making light of the fact that I’m living with a painful disorder. There is no duct tape or glue in this story. I’m held together with faulty collagen and weak connective tissue — I have Ehlers-Danlos syndrome.

I saw how quick you were to judge me. I would prefer not to have anyone lower their expectations of me. I want to live limitlessly and without expectations. I want to be just as pleasantly surprised by my abilities as anyone else.

I don’t expect, admiration or pity. I just need understanding and acceptance. And since there were so many times I had to cancel, you need to understand I have good days and bad days. Even though today is a good day — and the good days outnumber the bad days — there’s no guarantee tomorrow will be good or bad. Likewise, you simply cannot assume I would be able or unable to do something based on the previous day. You should ask if I’m up for an adventure.

I never want my limitations to be a part of my identity. Just know I don’t need validation from you or from anyone else. The remarkable thing is that I lived with this my entire life and never knew I was different.

I just want to blend in and not be treated any differently. To be honest, I don’t even consider myself to be sick, as that’s not the way I see myself. I’m happy, active, full of life — and capable.

In the event that another person chooses to disclose details of a chronic illness, please consider the following: When someone chooses to confide in you, he or she is obviously not asking for you to turn their story into a punchline of a joke. When someone is finally comfortable enough to be forthcoming about personal details, please remember they might not have always been able to talk about it. It’s a big step and it took courage. While nervousness is understandable, failing to think before you speak can be potentially damaging to your relationship with this person. 

So if you’re struggling to find the right choice of words, try to be considerate of the other person’s feelings while you’re at a loss for words. Simply thanking the person for considering you were worthy of the truth would be a meaningful response.

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