#interstitial cystitis

The time was after 6pm and you only just realised that you haven’t had a sip of water since midday, or taken your prophylaxis antibiotics, and also haven’t been for a singular toilet break. One more hour until you get to go home, right? But the urge to literally run to the toilet came on all of a sudden, and you quickly mumbled something to your colleague and rushed off.

The dreaded pain. The sting. The sharp shooting pain that can’t be described on where it’s coming from or why. “No, no, no” your heart immediately sinks. This means it’s the start of long and painful road. A physically exhausting one too. “Not again.”

It doesn’t matter how much water you’re going to drink, or whether you’re taking your prophylaxis medications, you need an antibiotic prescription, ASAP.

The doctors office was long shut after trying to call them many times, so you opt for water, cranberry juice (knowing it will contribute to nothing) and well… hopes and prayers. By the time you walked back to the cafeteria, Jack was waiting by the counter for you. “Hey beautiful”

“Heyyy Jack” you force a smile you don’t quite feel because now you’re starting to feel nauseous, “same as always?”

“Sure.” His eyes follow you as you walk behind the counter, putting your apron on. “Forgetting something?”

You pay yourself down, looking at your body wondering what’s missing.

“Me!” He chuckles, “I was waiting for a kiss?”

“Oh shoot sorry!” You giggle, leaning over the counter for a peck. “It’s been a long day.”

“Not long to go now, are you gonna come see me after?”

“Sure I’ll pop by with some more coffee. Maybe a muffin or two.”

“That’s why I chose you.” He flirts.

“Just that?”

“Actually it’s a lot more than that.”

He waits for his coffee, eyes watching you as you work, then pays for it, leaving a generous tip. “Hey Jack, umm can you not look at me like that?”

“Like what?”

You lean in and whisper, “like I’m a snack.”

He leans in, whispering and matching your tone, “why has someone said something?”

“Yeah… some colleagues said that you look like you’re about to eat me.”

Jack chuckles, one hand cupping the back of your head to bring your face toward him, “I don’t think I can do that, sorry. You’re the best snack I’ve ever had.”

The next morning you wake up to a couple of messages from Jack, wondering why you didn’t come see him after your shift. By the time you closed up the cafe, your head was mushy, with a headache pulsating just around your temples. But you opted for an excuse about being too tired — it was much easier to say this than explain to someone you’re dating that you’re spiralling because of an infection.

The doctor’s office finally answered the phone.

“I don’t need to bring in a urine sample.”

“…”

“Because it’s a chronic UTI.”

“No, I know what the symptoms are.”

“I’ve done the dipstick at home. Positive leukocytes and nitrites.”

“No, it won’t matter if you send it to the lab.”

“Look just please-“ you sigh defeatedly.

“Okay if you just look at my file and read my notes-“

“If you just let me finish- thank you. Please look at my file-“ *arghhh*

“Yes. That type of antibiotic is fine. Thank you.” *finally*

You hang up, “finally! More questions than the frickin CIA!”

You chug a load more water, avoid running to the toilet because you just know nothing's gonna come out except pain and discomfort, and head over to the pharmacy to pick up the meds.

Tap tap tap tap tap.

Someone’s annoyingly tapping on the counter at the cafe and you are so close to throwing a cup of coffee in their face. They clear their throat. With the most evil look you turn slowly to look at who it is.

“Jack! Oh my god I’m sorry!” You quickly set down the jug of milk and rush over to him, “I was deep in thought”

“You looked like you’re about to.. never mind.”

“Sorry” you murmur, “bad day.”

“How are you feeling?” He presses his lips against your cheeks and you feel like you might just about be able to get through your illness.

“Me?” A quick lie would save everyone the trouble, “I’m fine, just getting on with things…”

“You sure?” He can see right through your bluff. “Because you keep rubbing your back like you’re in pain.”

“Oh it’s… playing up recently.” You brush it off causally. The UTI has now most certainly infected your kidneys. “The usual?”

“Yes please sweetheart.”

To the best of your abilities, you try to hide the fact that you’re about to pass out as you prep Jack’s coffee. He watches as you move, how calculated it is, how deeply you inhale like you’re trying to increase oxygen flow to your brain. And generally how tired you are. By the time his coffee is ready, you throw in a cupcake for him, and kiss him goodbye.

He asks again just before leaving if you are feeling fine. You answer the same, “sure yes.”

Years of battling a chronic illness that many people simply brush off, or gaslight you into thinking that it can’t be that bad, had taught you to simply not share any.

Doctors have made you believe that the illness is all in your head. Some doctors even suggested that the way you’d been wiping is wrong. Or, that you’re not pissing straight after sex. Maybe your partner had given you something? Or that you’d not been drinking enough water. Every doctor requested yet another STI test.

The many ‘provoked' ideas they threw at you didn’t even apply to you as a person. But they still suggested it anyway.

Not many doctors actually thought about the fact that your bladder simply harvests bacteria, at no fault of your own? That your illness does not need a cause? That it simply just… happens?

So after years of battling, and advocating for yourself, you finally got your diagnosis. But at what cost? Because you’re still suffering.

So yes, it was much easier to simply brush off the illness as nothing, instead of accepting advice from someone. Even if that includes Jack, the guy you like so incredibly much.

Jack had been clock watching again, waiting for your shift to end, hoping you’d come down to see him. He never anticipated that you’d be supported on either side by your colleagues, your limp body being dragged into the ER. He doesn’t remember what the person helped you said, but Jack remembers yelling at anyone and everyone to get you into a room. It all passed in a hazy blur as he tried to take control of the situation, until Shen finally stepped in and took over the case.

Jack felt the pressure ease just a tiny bit, knowing he could be with you and not work on you. “Sweetheart i need you to stay awake. I know you’re feeling tired.”

“I’ll try” you whisper.

“We’ve done bloods, just about to scan your abdomen. Your colleague said you had cramps?”

“I have chronic UTIs” your hands cover your eyes as you start to sob. You think to yourself, pathetic, crying over a UTI, but it was much more than that. “I think it’s spread to my kidneys.”

“Hence the back pain.” Jack mutters anxiously. “What are you taking for it?”

“Prophylaxis is trimethoprim” you hate how much you’re crying over how many people are in this room working on you, “but I have an actual flare up of the chronic UTI- does that make sense please tell me what makes sense?”

He assure you, “of course it does. What are you taking for that?”

“Nothing. The pharmacy refused to refill the prescription because the insurance wouldn’t pay for it.”

You see the moment is reaction changes into pure rage. His jaw tightens, his lips press together, and he looks away from you. He’s well aware that this healthcare system that he works for, that tries to save people’s lives, has failed the one person he cares about.

Jack looks up from you toward Shen, shaking his head in disappointment. “Start on Cefuroxime?”

“Already one step ahead of you. Need to get the temperature under control too.” Shen answers.

“I’m sorry- im really sorry”

“Nothing to be sorry about.” He wipes the tears away, pressing a gentle kiss to your forehead, “we’ll sort your prescription, but for now let’s get you all the meds so you don’t go-“

“Septic, I know”

“We won’t get to it, I promise.”

The sound of your cries fill the room, breaking Jack’s heart one cry at a time. It’s the sound of someone who’s too tired of dealing with an exhausting illness, a misunderstood illness and more importantly, someone who simply wants to feel okay. Or normal as someone without a chronic illness, would say.

The pain meds start to ease the pain away slowly, the ache in your belly is still there but it doesn’t feel so tiring, the urge to urinate nothing will never go away, and the back pain is pretty much still there. But you feel somewhat better, as in, you don’t feel like collapsing anytime soon.

Jack stays with you the whole time, never letting go of your hand, watching your vitals on the screen, assessing and reassessing your sepsis score.

“Jack?” You whisper at him but he’s fixated on the screen. He hasn’t blinked in 2 whole minutes. “Jack look at me?”

It takes for you to tap his hand a few times for him to break eye contact, eventually moving his gaze onto yours. “Sorry did you say something?”

“I feel a bit better now.”

He smiles softly, “that’s good to hear.”

“What’s on your mind?”

He hums, holding back what’s truly on his mind.

“Cmon you can tell me.” You prepare yourself for the speech: it’s a UTI, it’s no big deal, why didn’t you drink more water, why haven’t you taken your meds, are you sure you’ve not missed any days…

“I’m.. a bit frustrated. Maybe that’s a strong word. Maybe disappointed? No that makes it sound…”

“Jack” you cut in, “talk to me.” He’s frustrated with you?

“Why didn’t you come to me? When you didn’t get your meds? I could have helped you. I would have got them for you…” Oh. Most people wouldn’t say that.

“I thought it’s not fair to tell the guy I’ve been dating for a few months that I can’t afford my meds…”

“Huh.” That same disappointing look you anticipated is now all over his face. You move your hand away from his but he quickly pulls it back. “So you think I’m just a guy you’ve been dating?”

“No but..” your mind is confused.

“Sweetheart I like you, a lot. And not because of the great coffee you make, or the free muffins you’re always giving me, or because I like to eat you like a snack." He chuckles and you do too. "I like you because of you. I like you because you’re sweet and kind, and you like an old man like me.”

“I like you too Jack”

“But next time something like this happens you come to me. Because I don’t ever want you to get to this stage, ever. The thought of you going septic under my watch terrifies me.”

“I know..” you try and reassure him, “it was never gonna get to that.”

“But it could have.. and I can’t afford to lose you because I really, really like you.”

“So you don’t think the UTI was provoked?”

“Who the hell even thinks about that!”

“You’d be surprised…”

“I don’t care if it’s provoked or not. I care that you take care of yourself. And when you can’t… I’ll do it. I want to do it.”

To think that someone actually wants to take care of you, willingly, is a privilege you have not yet experienced.

“Okay” you nod eagerly, “okay sounds like a plan.”

“I also have one more question…” he leans in closer to your face, “can you not refer to me as the guy you’ve been dating?”

A small unexpected giggle comes out, “should I call you my boyfriend or something?”