It’s been a decade since I first began showing symptoms of chronic illness. A little less than five years ago, those symptoms intensified and I woke up one morning with a headache that has never gone away. I’ve been diagnosed with New Daily Persistent Headache definitively and a whole slew of yet-to-be explained symptoms, from muscle weakness and tingling, to dizziness, and extreme fatigue. My life now revolves around medical appointments, and the chore of daily life with constant pain and other symptoms.
Needless to say, dating hasn’t exactly been at the top of my to-do list. It takes time and energy, which I don’t always have. I am trying to maintain my freelance writing career, and when I’m not resting or working, I’m committed to my spiritual community and my family and friends. Still, I get lonely, probably lonelier now than ever before. I want to share my life with somebody, but I’m afraid that a relationship just isn’t in the cards.
Any single twenty-something would probably agree: It’s hard to meet people. And the social media divide makes it increasingly more difficult to get out there and meet someone face to face.
For someone with a chronic illness, this is even harder because I don’t get out as much as I’d like. When you have limited stores of energy, everything has to be carefully planned, activities prioritized so that you can complete the most important tasks. Just the idea of going out on a Saturday night makes me want to crawl under my covers and take a nap. So meeting someone the old-fashioned way is difficult, to say the least.
Of course, there’s online dating. I tried it before my headaches started. I went on two horrendously bad dates that were awkward and uncomfortable, with zero connection. I also experienced a slew of painfully derogatory and borderline abusive messages/exchanges about my physical appearance and even threatening sexual violence. As someone who has long struggled with self-esteem and confidence anyway, it was damaging.
I think about creating a profile now, about what I would say about my work and my life, how I am unable to work full time and I live with my sister, how my days are ruled by pain and exhaustion, how I frequently have to cancel my plans when I’m too sick to go out, and it terrifies me. Not to mention the fact that a quick Google search would reveal everything about me and my health situation (I don’t exactly keep it a secret).
A friend once told me that I over-share, that I don’t need to recount everything about me on a first date. But how could I hide my chronic illness? It’s such a major part of my everyday life, it feels duplicitous not to talk about it.
At the same time, I don’t want our first interaction to be all about my “deathyness,” as Michele Lent Hirsch, author of Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Just Seem Fine, so aptly describes it.
Now, this isn’t me trying to be overly dramatic. I am not dying. But, as Lent Hirsch describes in her book, young, sick women struggle with the way their illness makes other people feel. She writes “when young women are living with something medical, it’s in direct opposition to what we’re told we should be like: airbrushed beacons of sparkling youth.”
How could I hide my chronic illness? It’s such a major part of my everyday life, it feels duplicitous not to talk about it.
I often worry about how my illness makes other people feel: I got involved an old friend a short time after my headaches started. He knew me well. It was easy to talk about my illness and we had a good time together. We kept things casual, more like friends with benefits, and I accepted that, even though I wanted more, because I was afraid that if I expressed my desire for a serious relationship, he would freak out. He’d seen the negative side effects of my illness, how hard I struggled and the emotional toll it sometimes took on me, how I’d get sad or even depressed, and I knew it made him uncomfortable. So, we kept things as they were, in a state of me hoping but not really knowing exactly where we stood, until he eventually moved on.
I’ve spent a lot of time trying to come to terms with my life as it is now, and I’m in a pretty peaceful place, but what about someone who isn’t sick, who doesn’t have to run their life on their body’s schedule, no matter how much they wish they could do more? How does a healthy person come to grips with my life, and even more than that, is it fair for me to ask them to?
Beneath all of this, I can’t help but wonder, deep within myself, within my most private circle of self-doubt, whether or not anyone could actually love me.
As much as I’ve worked on accepting my life with chronic illness, I still wrestle with my own sense of value and self-worth. I still worry that I am not doing enough, that I’m not living up to my potential. I look at other people around me my own age, what they are doing with their lives, and I worry that I’ve fallen so far behind. I have to learn that, at the end of the day, none of that matters.
It turns out, before I spend too much time worrying about whether or not there’s someone out there for me, I have to learn to love myself. This seems like an obvious answer, not just for the chronically ill, but for anyone. But, just like so much else in life, it’s a journey.
Because I am full of light and love, ready to pour myself out into relationships with the people around me and hopefully make a difference in this world. So, maybe it doesn’t really matter what I can or cannot do, because there’s only one of me in the whole world. I am worthy of love.