'When someone sees you at your weakest, figuratively and literally, and holds you to remind you that you'll get through it together, you know you've found a good one.'
is complicated by the ongoing symptoms they experience. There are no tricks to navigating love when you’re sick, says Alex."I think it's universal in every relationship that you need mutual respect for each other's feelings and experience, and willingness to learn new things and adapt to new hardships.
Twenty-nine-year-old Athene lives with her long-term partner, who she relies on for physical care such as washing herself. She says that their dynamic has changed, clearly marked as"before" and"after" she got sick, and speaks to a fear that I and many other young disabled women live with."We want to do life together whatever that entails," she says.
When asked what makes her relationship work, even in difficult times, Athene says:"Since we’ve gotten into a routine of planning around my illness we’ve also tried to prioritize joy – investing in things we like and can do from home, and trying to get into nature whenever I’m well enough to." Many people equate spontaneous decisions with romance, constantly searching to keep the spark alive through shared new experiences. I did, too, before I got sick. Now, my partner and I have had to make do for weeks at a time where I could only move from bed to sofa and back again. We’ve played Scrabble in the dark when my neurological symptoms could not tolerate light and traveled to hotels only to be stuck in the room, eating delivery food.
None of this is to say we don’t have fun or have opportunities to feel like other couples our age, but the grass certainly isn't always greener. I hate to spout toxic positivity, to suggest thathas made me a better girlfriend or a kinder person. Most weeks I grieve the functioning body I once had, and fear the future that almost always seems to be getting worse. I do know that being sick has brought us closer; we've reached a new kind of intimacy that I have never felt with a partner.
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