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What It's Like Being Single While Struggling With Chronic Illness

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A few days ago, I had a seizure. I have non-epileptic seizures, which means the cause is uncertain (could be neurological, which would make sense with my host of other neurological problems, could be a nutritional deficiency, which would make sense with my host of autoimmune problems, or could be psychological, which would make sense, well, for the same reason). Non-epileptic seizures tend to last longer than epileptic seizures, they’re not life-threatening, and other than that they present pretty similarly. When I have seizures, I start out by getting very confused and disoriented, then I’m twitching and shaking, then my thought processes are just gone and I’m writhing on the floor and hitting my head on everything in sight (or out of sight, because I don’t think I keep my eyes open most of the time). I kind of go back and forth between that, rolling around and laying still for a few hours, and if anyone is there to witness it they usually note that I come in and out of being responsive, usually with significant confusion about basic information such as where I am and what year it is as well as more obscure details (recently during seizures I’ve been concerned that I somehow permanently lost my ability to speak Spanish, something that I can’t usually do while it’s happening but always comes back in a few days).

The thing is, though, most of the time when I have seizures, no one is around. Which means I don’t have any way of knowing what’s going on, where I am, what year it is, whether I’ll ever be able to speak Spanish again or even whether or not I’m actually having a seizure. It’s absolutely terrifying. I have them in my sleep sometimes, which means I wake up after intense dreams of seizures with sore muscles and a foggy head and I have to try to figure out whether or not I had a real one. Sometimes I have them on the floor by myself, smashing into things with no idea how long it’s been going on or how much longer it’s going to last.

The best thing for me during a seizure is to have someone close to me there, comforting me, telling me what’s going on, asking me simple questions and helping me clear up my confusion and making sure I don’t injure myself. The past year or so, I’ve lived with roommates for the first time in my post 19-year-old life, and they take up that mantle when they can. But before that, there often wasn’t anyone around. And even now I have them alone frequently, when my roommates aren’t home or when they’re downstairs in their bedroom.

Last time, I could tell my seizure was starting while I was still downstairs. But it was late. They needed to sleep, and they both had a lot of work to do. I kept one of them from working because of a seizure just a few days before, and I didn’t want to do that again. (My seizures generally come every two months or so, but lately they’ve come in chains so I’ll go through a week or two where I have a few and then nothing for two months.) So I mustered up all my strength and energy to crawl up the stairs (literally crawl) and have a seizure in my bed by myself.

After a seizure, I’m usually pretty out of it for a few days. I can barely walk, I can’t drive, I can’t communicate my ideas well and I still don’t really know what’s going on. During these particularly rough days, I need help getting food, making phone calls and getting to doctor appointments. But there’s usually no one here to help me (because, you know, other people have lives and stuff), so I writhe in pain ignoring my responsibilities and either try to get to the kitchen using a walker or just lay on the couch hungry because I can’t make it. Some days it’s this bad even without a seizure, because my fibromyalgia, chronic pain/fatigue and migraines make my life very difficult.

The scary thing about this is my living situation is temporary. My friends agreed to host me because I was desperate and ill and had nowhere else to go. But they have their own lives and their own things going on. I’m looking for alternate housing now (which is nearly impossible with the meager amount I get from SSI Disability, and waitlists for subsidized housing often take years), and I’m not looking forward to going back to how it was before, when I would have seizures alone on the floor of my one bedroom apartment and leave dishes in the sink until they were about to topple over since I didn’t have the strength to wash them. I’m not looking forward to going back to texting every friend I could think of when I needed a ride to the doctor and still not finding one sometimes. I am, however, looking forward to not getting in my friends’ way and constantly putting an emotional, financial and logistical burden on them by being sick at their house all the time.

It wasn’t until things got this bad that I ever wished I was married.

I know being married while chronically ill presents its own set of challenges. I’m not at all denying that. But I’ve read countless stories of people with chronic illness whose partners or family members take care of them, comfort them, support them and help them get what they need. I know it’s not ideal, but having someone as a partner in this messed up life of mine would mean consistent help getting my walker into my car, someone to steady me when I’m dizzy, someone to get me simple things I need on a regular basis. I have this with my roommates, when we’re in the same place, but our lives are different and we do different things. If I try to travel, despite my issues, I’m doing it by myself. That’s one of the biggest hindrances to going anywhere for me – it’s so hard for me to manage simple tasks by myself, some days. I make plans tentatively, because it’s always dependent on whether or not I’m able to drive that day, how I’m feeling and what accommodations I’d need to provide for myself. When I plan to go somewhere with my roommates, they help me with that. When I plan to go somewhere alone, I often have to cancel.

Before I recently got SSI, I was impoverished. I quit working two years ago due to illness, and I had nowhere to go. I stayed with various friends, living out of my car, then with various strangers, hitchhiking around Central America because it was cheaper than traveling around the US. I collapsed on dusty roads with pain and threw up in peoples’ trash cans. I came back to New Mexico and squatted in temporary situations until my friends could come get me and bring me to live with them in Tennessee. If I didn’t have friends to put me up, I don’t know where I’d be. My savings would have run out and I’d probably be homeless indefinitely, even after getting SSI. If people who can’t work don’t have someone to support them, it takes a long time and a lot of effort for them to get established on their own, and they’re often living in deplorable conditions while dealing with injury or illness.

I’ve always enjoyed being single. I’ve been single for seven years, and I never had a strong desire to change that. I liked my independence and my freedom, even though my health problems have been bad this whole time. I did occasionally miss having a boyfriend to hold me and comfort me when things get bad, but I didn’t miss being controlled and bullied. Now, though, things are bad a lot of the time, and I’m really not sure what to do. I don’t feel like I have much to offer, and I feel like I have a lot of need. Have I condemned myself to a life of poverty and isolation? Should I have gotten married young so I would have someone to walk this difficult path with me? Or is it better that no one has to? I don’t think there’s a way to know.

The thought of leaving here and starting a new life on my own is daunting, and frankly I wish I had someone to make the journey with me. I desperately want to travel again and I know it will be very difficult on my own. Everything has been difficult on my own.

As a single person with chronic illness, all I have to rely on are my friends. If you have a friend with chronic illness (single or otherwise), ask them how you can help. If you want to invite them somewhere, see what you can do to make the outing easier on them. If they live alone, check up on them once in a while. Even if they don’t, having someone come over to help cook and clean or just keep them company can help them feel like less of a burden on their partner/family/roommates. Just make sure you ask first to confirm that’s something they would appreciate, and make sure it’s at a good time for them. Be flexible. Don’t always assume that someone else is helping your friend out. Maybe they don’t have anyone right now. Or maybe they feel all alone, even if they aren’t. Remind them that they aren’t. Words are nice, but actions are better. Be there for them, if that’s something they need/want. Be understanding when they’re not up for it, and don’t write them off. You don’t know how much they may be relying on you.

Getty Image by kieferpix

Originally published: April 30, 2018
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