Single and Content, Living with Cystinosis

As a female Bible college student, an outside marker of pious and godly womanhood consisted of having a male significant other. While this is not strictly a religious sentimentality about the purpose of being born in a female body, Bible college added the weight of being right with God behind those women who were married to men.

I remember vocalizing my worries as a female living in a disabled body about the unlikelihood that a male focused on ministry would even consider marrying me. Of course, the females who heard my worry shamed me for thinking so negatively because, as a good girl, God would provide a husband for me. How foolish was I in thinking my rare disease could interfere with God’s plan for his daughters!

And it wasn’t just religious females who considered my worry trite. Females who adhered to different life paradigms criticized my feeling that my disability was a detriment toward holy matrimony.

Living with a body that is unable to perform common life activities does factor into marriage decisions. I do not blame rare disease. I do not feel cystinosis has so great of power that it can determine who I am and my pursuit of happiness. Even if I had been born atypical in the chromosome department, there is one particular reason for legal marriage that would still have factored into me being single at age 30.

I have noticed that adults desire to date other adults who work for pay.

Of course, many of my peers living with rare disease have paying jobs. Among these beautiful lives, some are married and some are not. The way my illnesses affects my health, I do not work regular job hours for regular pay.

Throughout my adult life, I have made choices in how I obtain healthcare for medical treatment and appointments, where I live, what I eat, what I wear, and to what extent I am transported to places I need to be. This has been seen as a liability by other adults who are looking for a potential marriage partner because I am reliant on a select few people to meet needs I cannot meet alone.

I have noticed that adults desire to date other adults who WANT either biological children or adopted children.

Of course, many of my peers living with rare disease desire children in their lives and have either given birth or successfully obtained children they enjoy rearing.

I do not desire to give birth nor do I desire to rear elementary age children. This is the reason why I feel cystinosis does not have power over my single state of identity at this point in my life.

I am not single because no one fell in love with me or I did not fall in love with anyone. I am single either because I have been honest in my lack of desire for children and about my finances, or dates have been equally honest about their concern for my dependence and their desire for children.

It really would not be a big sacrifice on anyone to choose to marry me. No one will be a hero for claiming a spouse who has more needs than someone else her age. Whoever is mutually chosen by me will just also have chosen this journey alongside another human soul who places companionship above financial stability and offspring.

I really do not think my mind and heart are so uncommon as pressure from culture tries to insist it is, whether it’s from a pulpit or social media.

To learn more about cystinosis, click here.
Rebekah Palmer

Rebekah Palmer

Rebekah Palmer is the author of two books published by Aneko Press: A Letter to my Friend and A Letter to Myself. She also has poetry included in the anthology Strength: Lives Touched By Cystinosis. She is a rare disease news curator for her blog Cystinosis Society. Please visit her author profile on Goodreads and her author page on Facebook called Jairus Daughter to ask any questions or to reach out.

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