Dating with a Rare Disease

I was diagnosed with a rare disease in my 20s. I had been a single mom for a couple of years and was tossing around the idea of dating again but after my diagnosis, more insecurities set in. Who would want me?

Friends would call to ask what they should wear on a date and I was trying to figure out how many dates do I go on before telling a potential boyfriend about my disease? I saved myself the heartache by becoming extremely guarded. What was the point of pursuing a relationship because while I was young and looked healthy on the outside, I was so sick on the inside. Once someone realized what that all meant, he would leave. I dated here and there but ended relationships before they got too serious and I made no mention of my illness.

That is until I met Tim.

These challenges will test your relationship but when you find the right person, it's worth it.

Something about him was different. Perhaps it was our blunt conversation the first time we met when he jokingly asked what was wrong with me since I was single. I was instantly amused and figured, he asked, so I’m going to tell. I informed him that I have a rare disease called Fibrosing Mediastinitis in which my body develops an abundance of scar tissue in my chest that crushes my organs, arteries and veins. The few doctors who know of my disease explained that I would die by slowly suffocating from the inside out.

I paused, eager to hear the excuse Tim would come up with as to why he suddenly had to leave but instead, he asked questions. I sat there wondering why this man was still talking to me after everything I had just shared and before the night was over, he asked for my number. Two years later we were married!

We often reflect on the first night we met and how different our lives turned out from what we envisioned. Every relationship will have ups and downs but adding a rare disease in to the mix will definitely intensify those issues. Our date nights now range from dinner at our favorite restaurant to Tim holding my hand in the hospital as I recover from yet another procedure. These challenges will test your relationship but when you find the right person, it’s worth it.

Throughout all the hardships, the pain, the never-ending doctor appointments, tests and surgeries, Tim always finds a way to make me laugh. We have grown in our faith, we have healthy children and we experience tremendous amounts of joy in every day ordinary moments.

I used to think my rare disease would hinder any chance of me having a normal relationship but instead, it led me to the right relationship! If the only reason you are avoiding relationships is because you have a rare disease, don’t let fear stop you like I first did. Take the risk because you never know who’s waiting to be added to your story!


About Rebecca

Rebecca was diagnosed with a rare disease and given no more than ten years to live and that was 15 years ago. Faith and family give her the motivation to fight for the life doctors said she would never have. She shares her most recent challenges and triumphs on her blog and her whole story is published in a book titled “I’ll Take My Disease Rare Please: My journey with fibrosing mediastinitis”

For more of Rebecca’s writing, visit

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