"Hard, overwhelming and draining." The harsh reality of caring for a chronically ill partner.

I can barely remember how things were before illness was the silent third entity in our relationship.

Before being handed the final diagnosis of Crohn’s disease, I honestly believed my partner would get better.

I can’t remember if I thought he just had an infection, some bad bacteria, or was allergic to something, but when the news was dropped, my world suddenly plunged into slow motion.

I’d been frantically Googling his symptoms for months, and had a list of unmentionable “worst cases” in my mind; bowel cancer at the top and Crohn’s disease – a type of inflammatory bowel condition which is lifelong and incurable – being a close second.

My partner, Tom, however, had avoided Google. “I don’t trust internet diagnoses,” he’d say, between vomiting, trips to the bathroom and countless doctors visits to find out what was wrong.

So, when the hospital staff came into his room and handed down their finding, I started to cry, the words ‘lifelong’ and ‘incurable’ flashing in my mind.

Tom looked at me, cocked his head to one side as all of the colour drained from his face. “Why are you reacting like this?” he asked, confused and scared. “Is it bad? Should I be worried?”

My emotional reaction to my 26 year-old partner’s illness was the first time I’d dropped my exterior of stable, everything-will-be-alright girlfriend and shown the reality of how f*cking scared I was for him. The past six months since he’d started to get sick had been hell.

Seeing the person I loved in so much pain every day, not being able to help and not knowing what was wrong, was torture. I just wanted him to get better.

I remember going into the drug store a few months in and just buying every stomach drug, vitamin, and painkiller they had, quizzing the poor pharmacist on what Tom could and couldn’t take together. I was desperate. The doctors didn’t seem to be doing anything and the surgery to find out what was wrong was still “eight to twelve weeks away”.

Tom had almost completely stopped eating, scared that anything he ate would trigger his symptoms, and he was rapidly losing weight from his already thin and lanky frame.

I got back into my car and cried hysterically for an hour, before wiping my tears and hoping my puffy face disappeared by the time I got home, so he wouldn’t have to see that I was upset.

After all, he was the sick one, and I had to be strong for him.

Since that day, I’ve secretly cried, yelled, worried, and freaked out more times than I can count, never really letting him know how I’m feeling, and always for the same reason; he has enough to worry about, and I’m not the sick one.

It breaks my heart, but I can barely remember how things were before Crohn’s. I can’t imagine a life where Monday mornings aren’t started with methotrexate injections, we don’t think twice about every meal or regularly talk about his bowel movements, just to check everything is normal and okay.

Now, we can rarely even cuddle in bed, because his stomach hurts too much most of the time.

Because that is the reality of having a partner with a chronic illness. It can be hard, and overwhelming, and draining. Even when things are good, the illness is still present. The truth is, I harbour a lot of guilt about how I feel, especially having any negative feelings about how hard it is.

And while our relationship is strong, these things do take their toll. A 2001 study found that anxiety and depression were very high in partners of people with chronic illness, and that many partners attempt to disguise their feelings. And so, it’s time we started talking about them.

Being in this kind of relationship means often feeling overwhelmed by the sheer number of doctors visits, hospital stays, medication discussions, inevitable flare-ups and constantly changing diet choices.

Loving someone who is chronically ill means you’ll get really good at waiting. Because there is a lot of waiting. Waiting in emergency rooms, killing time in hospital wards and twiddling your thumbs while you wait for letters which will tell you how long you’ll have to wait to for your next appointment.

So much of my time is spent battling well-meaning loved ones giving solutions or suggestions as if I haven’t gone over every colitis website, forum and message board with a fine-tooth comb for advice to keep things in check. After all, that’s our only option. For those with Crohn’s, it’s all about keeping it under control, because it’s not curable.

There are a lot of feelings piling on top of each other until you feel like you’re drowning in emotions you can’t really talk about without sounding like you’re complaining, or that you don’t love your partner.

It’s being frustrated a lot of the time that you don’t feel they’re making the right decisions, but also wanting to respect their choices about how they handle their disease.

It’s feeling helpless, and useless.

It’s wishing you could do something to take the pain away, and knowing that no matter what you do, you’ll never be able to make everything better for them.

It’s watching your partner’s depression worsen, and their stress heighten, until they fall in a miserable heap, and wishing for everything to go back to how it was before.

It’s having to be intimate in different ways when sex isn’t possible because of the pain they feel almost daily.

It’s giving everything you have to the other person, because you want them to be as happy as they can. It’s doing everything you can for them, all the time. It’s being available, constantly, in case they need you.

It’s hiding your own issues at times because they’re sick.

It’s feeling unbelievably selfish for being upset and annoyed when plans fall through for the umpteenth time in a row. Because you know it’s not controllable, but you can count the dates you’ve gone one together since they got sick on one hand.

And there is a lot of feeling alone; emotionally, because you’re scared of airing your inner, selfish thoughts out loud. Socially, because your partner is often too sick to attend events. And sometimes, physically, when you’re sleeping on the couch because they’re up and down all night in pain and they don’t want to keep you awake with their stomach cramps.

It’s living in this cycle of complications, depression slumps, and relative normality, on repeat. Over and over again.

It’s feeling bitter, and thinking “Why him? Why us? Why me?” when you see them rush to the bathroom or doing their injections.

It’s being angry that we have to feel all of these things when we’re only in our twenties and other couples just get to have normal lives, empty of this kind of worry.

I feel so guilty for having these thoughts and feelings. While Tom is worried about anything and everything his body does and is coping with being diagnosed in his mid-twenties, I don’t feel like I have a right to think “but what about me?”

But I do. And I’m starting to learn that many people with a partner who has a chronic illness likely have similar thoughts they dare not air at the risk of seeming self-centred or a bad partner. But while sharing this experience with someone does make you a lot closer as a couple, it isn’t helpful to brush over the reality of how hard it can be.

It’s taken a year, but I’m finally getting to a place where I realise that being in this relationship doesn’t just mean looking after Tom all the time.

It’s being responsible for my own needs, and being okay with maintaining my own self-care and sometimes, thinking only of myself and being selfish.

Because I give one hundred percent to him, all the time. Sometimes, it’s okay to give some of myself to me.

Comment: Have you ever cared for someone with a chronic illness? How did it affect you?

This story originally appeared on SheSaid, a feminist news+culture website.

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