Lilly's Story

From a very young age, I was what one might call “boy crazy”. I daydreamed about meeting my prince charming and how my life would be perfectly complete when that happened (Thanks, Disney!). I was relentless in my task to find love. So much so that in preschool, I got out the measuring tape, measured my bed, and then proceeded to ask the father of my classmate and biggest crush if his son could sleepover because “I measured my bed and he can fit!”

Fast forward many more crushes and dates and we arrive at 19 years old, at which point I received back to back diagnoses of Crohn’s disease and psoriatic arthritis. I was very sick. Bleeding ulcers in my small intestine and total body arthritis to the point that I couldn’t move. The number of thoughts that run through your head when you’re diagnosed are endless but among them I remember thinking “Who will ever love me when I’m like this?”.

I continued to battle those feelings of self-doubt and a laundry list of other fears as I fought my way to remission. But from the time I was in the hospital bed, 30 pounds lighter and unable to swallow water without feeling agonizing pain, I knew it was my calling to do everything I could to help other patients so that someday, no one would ever have to endure the pain and suffering I experienced. I turned my struggle into my strength, and built a career in patient advocacy.

So how did this impact my love life? Over the past seven years since my diagnosis, I’ve been on countless dates thanks to the the online dating apps and have had a few long term relationships. Throughout this time, ironically, my autoimmune diseases were not something I kept secret, but actually a topic of discussion on nearly every first date. I controlled the narrative. Rather than talking about how these diseases made me weak, I shared how they made me strong, and gave me purpose. Most dates appeared to appreciate my honesty, and the way that I had dedicated my life to helping others.

For the most part, these experiences have given me confidence and faith that of course I can be loved despite these diseases I live with. But one of my relationships challenged this confidence in a way I never could have anticipated. I had been seeing a guy casually and we sat down to discuss if we wanted to “officially date”. I could sense hesitation and finally he said,

“I’m afraid of dating you.”

Afraid of dating me? I was so confused. And then somehow in that moment I knew.

“Because of my autoimmune diseases?”

That was exactly what scared him. He continued to go on about how he wanted kids and didn’t know if that was possible with me or if my autoimmune diseases would be passed on to my kids. On top of that, his mother who has a medical background said that I would “live life in a lot of pain and suffering.”

I couldn’t believe it. What right did his mother have to make that assumption about what my life would be like? And as for children, I want them too. I know there is risk that they could get autoimmune diseases but there’s a risk that they could get any number of things completely unrelated to my autoimmune diseases.

Despite this conversation, we decided to move forward and date. Being the determined person I am, I put together a multi-page PDF on my autoimmune diseases to try to help him understand. I found myself walking on eggshells when sharing anything about my life with autoimmune diseases or work in patient advocacy out of fear that it would scare him.

Spoiler alert...the relationship didn’t last. While it left me with insecurities, I have dated since then and have a newfound clarity on what a loving and healthy relationship is supposed to be. Here’s what I learned, and what I hope you will carry with you as you date with a chronic illness.

You are worthy of love

Never think that for one second you are worthy of anything less than true love.

Let go of guilt

Stop feeling guilty about the impact your chronic illness has on your partner. Do you want to know something? It’s made you stronger. I like to think that because it’s strengthened me as a person, I will be well positioned to help my partner through adversities that they will inevitably face in their life.

Always remember that everyone has something

Everyone has something they carry with them. It comes in all different forms. Sometimes it’s glaringly apparent from the beginning, other times it may take a while to surface. Life is unpredictable. Perhaps they don’t have any sort of significant “baggage” now, but their life could change in an instant and suddenly their world is turned upside down. And how lucky are they to have you by their side to help them get through it?

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