Why It's Not Easy to Tell Your Partner About Your Rare Disease

When I first started dating my husband I discovered he was a big hand-holder. We lived in New York City and it was spring; we walked everywhere and holding hands was part of the deal. We held hands everywhere: in Central Park, walking to the movies and then through the movie, over candle-lit dinners and on the late-night walks home. We were a Hallmark card of hand-holding. As we grew closer, and dinners together were no longer scheduled just assumed, the hand-holding was constant and so was the pain.

I always knew there would come a time in my life when I would fall in love, and I would have to tell that person that I had a rare genetic disease — a disease I could pass onto children. The timing of this conversation is a difficult one. You don’t want to share it too soon, and you can’t wait until you are so in love that your heart will be shattered if he feels you have tricked him, and he chooses to leave you and your broken genetics behind. You have to be an adult and time your truth carefully, like a soufflé coming out of the oven.

I made a conscious choice to enjoy falling in love and suffer the painful hand-holding for two months. To explain that my hands experienced severe burning pain would open myself up to explaining my genetic disease before I was ready, before my relationship was ready. I chose to hold hands in silent pain instead.

Telling the man you are falling in love with that you have a genetic disease is terrifying. Not only are you letting this person know how serious your feelings are for them, you are putting your “most dangerous flaw” out there, and it’s not as simple as admitting to having a bad temper or terrible credit. It is an invisible, genetic disease that impacts your health and can possibly pass onto children — his children — if he decides to love you enough. 

Trust in yourself to know when the time is right to share your truth. Hold your breath, look into his eyes and trust that the pain in your hands will be the worst of the pain. Trust in the love you have created and know that he will choose you and not let go of your hands, because that pain is far less painful than the pain of a broken heart.

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