When the Treatment for Your Rare Disease Changes Your Appearance

I had just said goodbye to my son at school two weeks ago and while walking back to the car an acquaintance yelled across the parking lot, “Congratulations, when are you due?”

Stunned, I said, “I’m not,” and walked quickly in the other direction. Even writing this I cringe — it is not the first time and I suppose won’t be the last time this has happened to me, but I still haven’t figured out how not to be jarred by it.

Logically, I know that I have no control over this — I take a medication daily that allows me to eat foods without reacting. It keeps me from having anaphylaxis when I go outside my bubble and keeps me stable when I am faced with my medical hurdles — like getting a COVID vaccine, having surgery, or receiving iron infusions. But the medication also makes me swell, it makes my face rounder, it makes me gain weight and yes, it even makes me look pregnant some days. I obviously know this; I am living within my body, uncomfortable and frustrated when I see the changes in my appearance, but when someone else says it out loud, the words sting in a different way.

By the time I got to my car, I was beyond upset and embarrassed. I have hesitated even writing this story, not sure I could expose this moment to others: but I also know I am not alone in experiencing this.

A day or two later, a woman posted in my rare disease Facebook group a photo of herself looking six months pregnant and asking if this happened to others. Unsurprisingly, many responded sharing their pain and frustration with this appearance change.

There are so many of us who live in bodies altered both by our diseases and also the side effects of the treatments and medications meant to help us. Many times, this means losing our pre-diagnosis physical self. And while everyone says it should not matter how we look — it does. As I look in the mirror, I remember what I once was, longing for the days when I did not have to think about someone mistakenly asking me if I am pregnant. When getting dressed did not seem like such a challenge, never knowing exactly what will fit from my closet. Hoping I do not look too swollen in my face for an important zoom work meeting or worse yet, having to be in person at a work event. Hoping every day that my diseases will stop being visible.

As I have reflected on this over the last two weeks, I am sad that so many in the rare disease world feel ashamed by their appearance. What does this say about our society and how ingrained we are to look for “normal” when people for so many different reasons will never fit that mold? I have realized that the problem isn’t about being asked if I am pregnant (though I would suggest not asking someone this), the problem is how disappointed I am with the reflection I see in the mirror staring back at me.

Why can’t I still feel beautiful even on the days I look swollen and red? Why can’t I still feel confident in myself when I am not my usual petite self? I know I need to try to find a way to feel good and beautiful in my body — not for others, but for myself. I know some days this will be easier than others, and this is OK too, as long as I am kind to myself and remember that rare can still be beautiful. That I can still be “me” even if some days I do not see myself in the broken reflection looking back at me.

And to the many others who live this reality with me — please know I see you. I support you. I stand with you. And I remind you just as I remind myself: we are beautiful, we are strong, and while we may be rare, we are not alone.