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This story was originally published on The Mighty.

Imagine having to choose between your life and marrying your significant other.

I have two rare chronic illnesses, Blau syndrome and Ehlers-Danlos syndrome. Both of these illnesses require extensive testing, blood work, appointments, and inpatient infusions on a regular basis.


If I were to marry, I not only lose my disability benefits, but I also lose my health insurance. If I were to lose my health insurance, my treatments that not only provide me with quality of life but literally keep me alive would be unaffordable.

Since I was diagnosed, I knew marriage was out of the question — not just because it would be a life or death choice, but because I believed nobody would ever want to have a relationship with me due to my significant health issues.

It’s one thing if your partner develops a major illness after you have connected, but quite another when you know exactly what the rest of your life together looks like. As much as we’d like to assume our partner could handle a major change in health, that isn’t always the case. The partners who can are wonderful people, just like my significant other.

When my health situation became bleak and I had exhausted my local options, I moved across the country to Minnesota to live near the major medical center that had been treating me for years. I settled into my new life, 2,000 miles away from my entire support system, including my family and friends. Thankfully, the treatments I moved for improved my health, and I had the energy and desire to make new friends.

A few years later, I met a man for dinner at a restaurant. Little did I know that introduction would drastically change my life forever.

While I never intended to have a romantic relationship with someone, as I grew to know him, it was clear he was able to look beyond my disabilities and just see me.

From the very beginning, I was open and honest, not only about my illness but about my inability to marry. If that was important to him, I always said, then he was with the wrong person.

For most who are unable to work due to disability, financial and medical assistance is immediately terminated upon marriage. Most government-based assistance programs are based on income, so if your spouse is employed, their income counts toward your limit and you become ineligible. Because I was disabled as a child, I am able to stay on my father’s private health insurance — as long as I don’t get married.

Through our discussions, we both agreed the real point of marriage is the commitment, not the legal aspect.

We always agreed that if we got to that point, we’d want to have a non-legal commitment ceremony where we publicly pledged our love to one another.

We aren’t having a ceremony because it seems like the next logical step. Our ceremony won't mean shopping for a beautiful dress, picking the perfect “first dance song,” or selecting a place-setting pattern. We aren’t having a ceremony so I can call him my husband. We are simply stripping down the ceremony to what we feel is the most important part of a marriage: the commitment between two people.

We won’t pretend we are married when we are not. We won’t have the same name, bank accounts, or any legal ties to one another. But we will continue to live as a committed couple for the rest of our lives. We simply choose to have our ceremony because our love and commitment is something we want to publicly share. To us, this makes the event that much more meaningful, personal, and special.

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