Growing Up and Falling in Love When Sick

I was born in 2002 and had my first NMOSD attack in 2008 when I was six years old.

I won’t wax poetic about it very long, but to say I grew up abnormally is an understatement. Having NMOSD is rough, but having it when you are a child not only introduces you to intense pain and sudden loss of function—it also stagnates you socially.

Growing up, my mother was always my best friend. The lines between caregiver and mother were already blurred, but when you add in the fact that I was bullied by almost all my peers for my disability when I did return to school, the amount of dependence I had on her was entirely unhealthy. But I had no one else, despite my efforts to be liked, and we proceeded the way we did for years.

When I stopped going to school, the options were to go to work with her or stay home, so we spent almost every day together. I would cry even if we were separated for a single night. When she’d go on missions trips, or girls’ weekends, or on a trip with my dad, I always cried. My mom was my person. But being sixteen and still crying when your mom leaves for a night is a bad sign—I hadn’t developed a sense of independence and needed the comfort of something that couldn’t change. Although my peers never loved me, my mother always did.

I think it was mostly the trauma of being sick so young that changed our dynamic, and it was hard to more healthily reconstruct any sort of boundary. And my mother was so scared that I was going to die or get hurt, so she controlled a lot of what I could do or who I could be around. She made the world seem too dangerous for me to be a part of. She did it out of love—she loved me, and she kept me safe, but I was rotting. Not being allowed to drive for long distances, not being allowed to drive in the rain, or at night—it kept me further isolated. Not being allowed to walk around the block alone or see a movie in the evening because she said I’d get attacked was also a bit out of touch with reality. 

When I entered adulthood, I began to realize how warped things were. I decided to open my heart again to social opportunities, realizing that I couldn’t just write off exterior social relationships—my mom couldn’t be my best friend forever, and I had to grow up and be allowed to do things.

I tried to connect with people nearby, attending a weekly young adults church group. However, 3 different people hit on me in the first month of attending. It would be flattering, except I was freshly 18, and two out of the three were in their late twenties, early 30s.

The third guy, however, was 23, and I thought maybe that wasn’t so bad. The guy seemed nice, and he said I was beautiful, and I was new to all of this. New to friends, new to romance. So I said yes, and we went on the date.

“Well,” I said once the hostess sat us. “I can simultaneously call this the best first date and the worst first I’ve ever been on, since it’s my first first date.”

His eyes widened and he stared. “What do you mean it’s your first first date? Repeat that?”

“I mean, it’s my first first date. I’ve never been on a date before,” I admitted.

He’s somewhat alarmed. “But why? Why hasn’t anyone dated you yet?” 

And that struck a nerve. What was I supposed to say? My mind fell into itself. Unraveling, unspooling the lines of me. I was looking for the answer as to why no one’s dated me before. It was why I went on the date in the first place.

“I’m not really sure why—“ I started to supply an answer without giving it enough thought because he was looking at me like I was a freak, and then he was suddenly looking at me like I’m glass, like I’m vulnerable. I didn’t know what to do to get him to stop looking at me like that. I was embarrassed.

I chose to change the topic to try to save myself from the spiral. It only worked a little—he was still looking at me like I was fragile. We talked about a lot of different things, but nothing we spoke of really was all that interesting. Every time he asked me a question I had to scramble for an answer—no one asked me things like what my favorite movie was before, and it was as though I was failing a quiz on who I was despite being me. I had never needed to know what my favorite movie was—I had no one to express that to. But I made it work, filling the gap while I considered answers I’d never given with “uhs” and “ums” as best I could. 

Eventually, I mentioned my NMOSD. I told him how stable I’ve been, how greatly it once impacted me but how much I’ve recovered over the course of a decade.

“So, you won’t live very long,” he responded, and it was a statement and not a question. I can’t fully articulate how sad this made me. I already have felt like a burden my whole life, something that I never thought anyone would want to take on, and this moment felt like my worst fears were confirmed. Even when my health is doing the best that it could possibly do, the threat of relapse that I’ve learned to manage my whole life long is too daunting. No one will ever want to enter a relationship with me, I had thought. 

We never went on a second date—when the guy leaned in to kiss me when he dropped me off, I dodged it. I texted him that I didn’t want to pursue this further at 2:30 am after I was done crying in the shower. 

And so I gave up again on people—I stopped attending that group and didn’t look for another. Even if you do have better health, the mental health aspect of illness can lag behind. It didn’t help that other people wanted me but I could barely stand myself. I threw myself into work, into writing and volunteering and school. I excelled at everything I put my hand at but felt empty and lonely most of the time. Who really cares about graduating top of your class when the only thing you want is to be liked and to have friends and relationships?

I’d volunteer at the church for hours—after working on making invites for 7 hours one day, and 6 hours the next, the pastor came to speak with me.

“Why are you here doing this? Don’t you have any friends?” he asked. Not even a thank you, just something to hurt me worse. 

And then there was a family friend who was a pediatrician—she and I were talking about all that I was doing, all the advocacy work and writing, the school work, and the money I was making at my old job, and then she said something that really threw me for a loop.

“Well, it’s so amazing that you’re doing all this! But what do you do for fun? What do you do with all your friends?”

I felt restless, and I felt like everything I did was good except making friends with other people. I felt that something was wrong with me and that all I was going to do my whole life was work. And although there are so many resources available, like support groups for people with NMOSD and other conditions, I felt I wasn’t disabled enough to be part of that and that I was too young. Having a rare disease is difficult, but having a rare presentation makes it so much worse, in that almost everyone I know with my condition presented at a much later age. Even people around my age presented when they were in their teens. I don’t know of anyone who was as young as I was and who has had it as long as I have—there are just no 22-year-olds who’ve had NMOSD for sixteen years. I have always felt alone. 

But in the Fall of 2023, I tried again with people. A Reddit post about Minecraft, of all things, caught my eye. I had always loved that video game—I was raised on it, I was accustomed to it, and here was a post by just some stranger, asking if anyone wanted to join a little group they were running…a shot-in-the-dark post made by someone else who was lonely, probably, was what I thought.

I kept scrolling. A video of a puppy wearing tiny wellies, a weird fact about babies, an ad for some anime game, a guide on edible mushrooms and how to cook them…and suddenly I’m thinking about that post again. 

How earnest the user who posted it was, statements like “please let me know if you’d be interested!” and “would anyone like to…” playing in my head again and again. I scrolled back up, and I reread the post and I typed a reply. It was a paragraph about how the idea sounds so awesome, how I’d love to join, what a great idea, all the niceties I can offer this stranger. But I didn’t post it, I deleted it. I don’t know why. I just don’t interact most of the time anymore. This was new, and I don’t like new things. 

I told myself what’s the worst that could happen? and I quickly typed out a very simple “I’d be interested!” and I hit send, begging myself not to overthink it. I all but immediately navigate the in-app menu to try to delete the reply once I’ve hit send, but I convince myself to let it remain.

And that was the moment my life changed in a way I’ll never be able to quantify. I finally had some success. I made a few close friends online who also were attending college at UCF. I was a fully online student, but I was still happy to get to be part of something, although I did crave the physical proximity the others had. 

I grew genuinely close to someone other than my immediate family for the first time—and it was more than one someone. I suddenly had a full group of friends who cared about me, and I just couldn’t understand my sudden windfall. Why now? Why did I have to live this long without having people in my life like them? G, who laughs at all my jokes, C, who is always down for an adventure?

And then there was E. I’ve never fallen in love before, but my word, I’d never fallen so hard. We seemed to speak in a language only we both could understand, and we clicked from the get-go. We started dating after a month of being friends, and he’s the one thing that has made sense. He makes me happy, and makes all the things I had gone through somehow manageable. He is clever, and funny, and always takes the time to teach me new things, and to hold my hand.

“What if things get worse, what if I go paralyzed or blind again?” I asked him once in tears. “Will you want me then?”

“Why would I leave? I have no plans to go,” he said, pulling me into his arms. “I’m not leaving.” He was willing to take me on, and all the things that that entails. The murkiness of my future didn’t jar him.

He’s been worried about my self-perception. I don’t know how to really knock it off, but I deeply dislike myself. I still think I’ll wake up someday and having friends and a boyfriend will all have been a dream. But he says “you’re always so sweet to me. So loving. I wish you’d be more loving to yourself, that you’d love yourself the way I love you.” He says “I was built to love you,” and I can’t understand it—why me? “Because you’re brilliant, and beautiful, and a good person,” he says. And maybe he’s right—maybe I’m worth all this effort and time, and maybe I deserve to be loved. I’m still working on figuring that out.

He also presumes competence, which is a first for me. Almost everyone who knows about my condition thinks I’m too sick to do things, or treats me as though I’m fragile, which always kills my spirit. Having one person who looks at me, sees me, and lets me pick my own limits is amazing. 

When I was nine, when my 4th grade teacher would ask for a volunteer and I’d raise my hand in class, the girl sat behind me would harshly whisper in my ear that I needed to put my hand down, that I was “too sick” and needed to sit and rest. 

And when I’m twenty-one, my mother says I’m “not capable” of driving to go visit my friends. Apparently, my fatigue is too bad, and the drive is too long, and I’m not strong enough or a good enough driver to do that. She said before she’d even consider allowing me to drive the 6 hours to Orlando, I’d need to get into a car accident because what if I got into an accident on the way down? How would I know how to handle myself? 

So, what was I supposed to do? Get into a car accident on purpose? Although I love E, and although I’d never felt so happy, my mom was unhappy. This was the first time I firmly pressed against her odd restrictions. I understand she just loves me, and that she was scared—and maybe I’m just young, and in love, and a bit stupid, but God, I’d like to be able to live. I’d like my life to be about more than just work and school and my stupid disease. I wanted more. I needed more.

I tried to talk things through with her, but no dice. She said I spent all my time with “the dumb boyfriend” and said that I couldn’t possibly be keeping up with school and work now that I have all these friends. These people were taking me away from her, and so she and my dad became constantly angry with me. I felt that I had to choose between two worlds: the world where I was a sick child who needed a doting mother, and the world where I was a full-fledged adult who managed her own condition to the best of her ability.

I ran away from home in March, if you can call it that. Considering the fact that I was 21 at the time and college begins in the Fall, it’s really just a bit of time to get my roots down before the semester starts. 

I packed up everything I could in my Kia Soul—it took me days to pack everything, and I had to leave some things behind. I left at 8 in the morning and drove the long drive without any issue. I could do it—my mom was wrong about that. What else was she wrong about? What else can I do?

It made me sad that my “dumb” boyfriend believed that I could make the drive when my mother didn’t. When she found out I left, and that I made the drive fine, she of course was upset. We reconciled quickly, but it burned when she said “I can’t believe you drove all the way to Orlando. Good freaking job!” as though she had never said I was too disabled to make it.

My mom and I are doing better now. She promised to work through her attachment issues and to try to stop the fear-mongering. She understands why I left, how she made me feel, and wants me to have all the adventures I need to be having. She’s a good mom—just a scared one.

I am going to get my MFA in creative writing this Fall, and I’m going to spend time with my friends, and do all the things I’ve never done. I went inner tubing for 4 hours down a river with them the other day, and although I put on sunscreen, the sunburn was painful. But I felt so alive. I’m learning to ride a bike now. I own a cat now. It’s a fresh start, and I’m happy.

All this to say, having a rare neuroimmune disorder impacts everything, particularly relationships. I wish it were easy, and I wish things were different—but I can’t change the fact that I have this condition. All I can do is continue to enjoy my life the best that I can, love the people I’m with, and learn to love myself in the process. 

Articles represent the views of the author and do not necessarily represent the views of SRNA.