Allie Schmidt has a rare and potentially fatal neurological disease. But like many people in the rare disease community, she didn’t look sick or disabled. That led to a dating dilemma: When should she reveal her diagnosis?
Rare disease patients and behavioral health experts agree there’s no simple answer. Dr. Nancy Irwin, a Los Angeles-based clinical psychologist, suggests holding off until a relationship shows signs of becoming long term.
“This is not first-date material,” she said.
Irwin recommends waiting for signs that things are moving in a serious direction, like if you’re discussing committing to an exclusive relationship.
“A gracious way to approach the topic is to state: ‘I need to share something with you. This may be a deal breaker for you, but I have a chronic illness. Here's how it affects my life, and how it may affect yours,’" she said.
For Schmidt, the right time was on her fifth date with someone because they seemed to be “moving into relationship territory.” She didn’t hide anything, she said, but she waited until she and the man she was dating were both emotionally involved and contemplating a long-time future.
Schmidt also wanted to disclose at a time when it seemed like a natural part of a conversation. That happened when he volunteered to cook breakfast for her.
“He commented on how healthy I eat and that's when I figured I could tell him why sticking to a healthy diet was so important for me,” she recalled.
The decision to share opens the door to many questions:
- Do you have physical limitations?
- Is your condition hereditary and how might that impact plans for having children?
- Do you expect your health to get better, get worse, or stay the same?
“Be prepared for the conversation to go either way,” said Shelley Meche'tte, a California-based certified life purpose coach and self-awareness expert. “Put all of your cards, including the scary ones, out on the table.”
It puts you in a vulnerable position, so broach the subject before you’re head over heels in love, said Craig K. Svensson, dean emeritus of the Purdue University College of Pharmacy and author of When There Is No Cure: How to Thrive While Living with the Pain and Suffering of Chronic Illness.
For some, the dilemma might be compounded by disappointments and broken hearts that came before, he said.
“Have you revealed your illness to others and watched them withdraw from you as a result? How a person responds to your illness will tell you something important about them and what they prioritize in a relationship,” Svensson said.
In choosing who truly offers partnership potential, look beyond a great smile and a keen sense of humor. Can you trust them with details about your illness if things don’t work out?
“How would you feel if the person knew about your illness if you were no longer in a relationship? Remember that you cannot expect people to forget information you have shared with them,” he said.
Schmidt recalls three encouraging characteristics in the man she was dating. He was confident, open minded, and had a proclivity for helping others. When she told him the truth, he accepted her and her illness. Today, they are happily married and have a 1-year-old child. But their married life has had its share of difficulties. Her disease has progressed and she can no longer drive. She relies on her husband for help around their home in Nashville.
Schmidt, who writes a blog about her life as a wife and mother with a chronic illness, says she’s glad she took a chance on love.
“He was compassionate and appreciated me and telling him about my health,” she said “He said that it didn't make him feel any different about me.”
