The Difficulty of Battling Chronic Illness When You're Single

It was 3:00 a.m. My room was almost pitch dark, except for the faint light beyond the curtains and the baby light on my desk, which I bought at a time when nightmares would have me clutching at a cross necklace so hard I would see the shape in dark red on my skin in the morning light.

 

I was staring at the ceiling, though it was not really visible. The pain in my abdomen was keeping me awake through my probably fourth episode of the Sleep With Me Podcast, which normally has me falling asleep halfway through the intro. I was alone, with the exception of a teddy bear and three sleeping housemates I didn’t dare wake up, and I was scared.

My parents are a country away, and I don’t really have anyone else I can call in the middle of the night. Well, the NHS, but when you have a chronic illness it becomes difficult to know when it’s business as usual and when it’s a legitimate emergency, so I would only call when I have exhausted every other avenue, or I’m sure of the gravity of the situation.

I excluded appendicitis – the pain was definitely in the upper digestive tract. Unless I have developed an ulcer (was the depiction of Lord Grantham’s one in Downton Abbey medically accurate? Should I be vomiting blood for it to be true?), it’s not an urgent medical emergency, right? My mind was spinning with all these questions.

I got up, walked mindlessly around the house, tried every home remedy for bloatedness and constipation (is it worth getting an Uber to the midnight pharmacy to see if they can sell me over-the-counter products in the middle of the night? Maybe I should call them first?). I sat in the dark, on the edge of my bed, eating prunes and drinking coffee. I walked to the bathroom, even if I knew it was pointless. The person looking at me in the mirror was not a person I recognized. Tired, paler than usual, hair so messy they were ready for an 80s-themed party and, most of all, scared.

This was not the happy, single girl who’s having the time of her life in London, going to a conference at 9:00 a.m. and getting home at 4:00 a.m. the next day. This was not the happy, single girl who wears lipstick for the sake of it, even if she’s just walking to the supermarket. This was not the happy, single girl who looks at her friends being told off by their partner for staying out too late on a Friday night with relief because she has the freedom to go to a wine reception at 7:00 p.m. and see the dawn from an Uber the next day (and when she doesn’t, that’s because of her body and nobody else).

The girl staring at me in the mirror was a girl who was asking how she’d cope with an illness that has no cure for the next 50 or so years if she can’t share the burden with someone else. It’s 50 more years of flare-ups keeping you awake at night, and going alone to a hospital appointment, and booking taxis to take you home when you are under total anesthetics and could never manage to get a bus on your own. It was a girl who was deeply scared of being alone.

The burden of a chronic illness isn’t even just psychological or practical. When you’re self-employed, you can only rely on your earnings and maybe insurance that covers periods of lack of work. When you’re also the only person in the business, you have no one to rely on for keeping the ball rolling while you are ill. You can’t even get someone to set up your out-of-office reply when you, at last, are so tired after a night of just trying to make things that little bit better so you can sleep, that you fall asleep the minute the pain is only imperceptibly lower, and need to sleep for as long as it lasts, since you don’t know when you’ll be able to sleep next. At the same time, it feels unfair to this potential person to see them as basically a nurse who is happy to cuddle you when you need someone to tell you everything will be alright, even if you know it won’t and sometimes you hate when people say that.

The situation is exacerbated by the fact that, if being single wasn’t enough, I’m also an expat. While I am lucky that my parents are both still walking this same earth, they walk it about 800 miles away. I have friends who are expats from Australia or other parts of the world that are further away than that, and I really admire their courage being halfway across the world. It feels hard enough to be a two-hour flight away.

Being an expat means your friends and the family you build in the new country are all there is to your support network. When you don’t really build a family, things get a bit more complicated. Sure, you have best friends, but ideally you wouldn’t have one in Edinburgh (soon to be Birmingham) and the other in York when you live in the most southern bit of London.

But best friends aren’t like having a partner, especially when they have one in life. I could make a compelling case for two single friends entering a civil partnership at the advent of old age, but deep down I would never expect a friend to wake up in the middle of the night because my abdomen is leaving me in agony. Maybe I’m wrong, since a friend did tell me off once for calling an ambulance to go to the hospital without waking her up (she was sleeping in the room underneath mine). I am reticent when it comes to being a bother to others.

I believe it would be easier not to feel like a burden on someone who loves you for better and for worse, as the marriage vows say. Maybe I’m romanticizing it, and married people with a chronic illness battle the same insecurity of feeling like their partners are better off without them. If I ever get married, maybe I will too. It just feels like all would be different, as I spend the lonely hours of the night with my own thoughts and my own pain with no one to offer comfort.

I went to look for some guidance at Mind, which is a UK charity dealing with mental health, and their advice is to open up, and if we don’t feel like we have someone we can be open with then we should build a better community around us. They also recommend taking it slow, and to stop comparing ourselves to the situations of others.

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