Professionalsickgirl

And now for something a little different. I’m writing a book, yup a real actual book with all the words in it. The working title is: Professional Sick Girl – The untold and unexpected lessons of a lifelong illness.

Below is a short extract that explores some of the realities of luurve with a health condition. Love it or hate it? Let me know.

Excerpt from Part Two: Love, chapter one. ‘Tinder dates from a West London hospital: Tales of dating with chronic illness.’

It takes a special kind of person to support us through our most vulnerable moments and  never use them against us. Lucy, a young woman in her 20s living with Rheumatoid Arthritis and Coeliac disease, should know.

During serious arthritic flares her ex would cut up every mouthful on her plate, as they enjoyed a romantic dinner date. Sometimes, with no ulterior motive, he helped her shower when she was so stiff she couldn’t lift her arms beyond her sides.

Anyone would be lucky to have such a partner.

Now recently single, Lucy finds it hard to imagine she could find someone like that again. A familiar feeling for many people after a break up.

Dating is an exercise in constant vulnerability. A conveyor belt of moments where we strip – sometimes physically, others metaphorically – in front of a stranger and wait for judgement. Most of us have something we’d like to airbrush away during these moments; I know I have.

When I was at University I developed a fear of intimacy. Not an unusual time to do so, but I had unusual reasons. Some girls won’t stay the night because they don’t want to look less-than-perfect the next morning, I used to avoid it because I didn’t want to spend the night choking silently alongside my date.

It was one night in my first term that started this fear. I can remember the sensation vividly. Pressing every inch of my tense body up against the cool, calming wall on one side of the bed as the boy I shared it with slept obliviously on the other. I could barely breathe; it felt like my lungs were closing in on themselves.

I was starting to panic. But I tried so hard to keep it in because I knew that if I started coughing, I wouldn’t stop for hours. In the end I spent the rest of the night in the tiny, grimy shower cubicle, coughing so hard I vomited several times into the toilet. If he heard me, he never said anything. Then again, he probably would have assumed I’d had one too many Smirnoff Ices.

I didn’t know it at the time, but my lung function had reached its lowest ever point. In a hospital test a month later I would manage to expel 45% of the predicted capacity of air from my lungs in the first second of exhalation, a measure known as FEV1.

Perhaps in the back of my mind I knew something was wrong, but I was trying so hard to be a normal student. On the outside I looked like a healthy, happy young woman. I was positively coy at disguising my coughing fits, expert at doubling back to ‘fetch something’ on a bad day before tackling flights of stairs with coursemates.

Cystic Fibrosis is a progressive disease and so I couldn’t reconcile my struggling health with my perception of self. As a child I’d been healthy and almost never saw the inside of a hospital. It took time to acknowledge the changes that CF was causing in my life and as a 19 year old woman I was not ready to accept them, let alone share them with prospective partners.

Fast forward to London, May 2014 and I tried a wildly different approach to dating. The spirit of Spring, new beginnings and Tinder was in the air. There was only one problem, I was in hospital.

I know! How could I possibly be sick enough to be in hospital yet well enough to date? Chronic illness is an unpredictable master. I had been in hospital receiving intravenous antibiotics for a chest infection for a week already and had another still to go. On this occasion my body responded well to the drugs and I was feeling ready to go home, but to stop the the treatment early could have resulted in a relapse. That didn’t stop the cabin fever! Scrolling through Tinder in the early hours of the morning due to drug-induced insomnia did help, however.

Meet J, from South London, an actor. We kept it casual for our first date and met in a café. I wore my cutest jumpsuit, black sandals and accessorised with my intravenous access device, a long line, suggestively peeking out of my arm and wrapped in a bandage.

He had beautiful brown skin, dimples and spoke eloquently about writing, acting and his multicultural upbringing. It was going so well.

I felt comfortable enough to bring up the bandage on my arm. I explained my condition and I told him I never let it hold me back. I spoke confidently and without apology but I noticed his body language started to shift and he drew his hand back across the table. The moment I revealed the tiny plastic tubing in my arm, his face blanched. Half disgust, half fear.

He told me, in a brief message after the date, that his ‘sensitive nature’ made it difficult for him to talk about illness so publicly. I messaged him back to reassure him, but I never got a response. I guess I’ll never know whether the tear that glistened in one eye as I told him was real, or if he was a better actor than he seemed. 

At age 25 I was starting to learn my most valuable lesson in love; rejection can be a blessing. Sometimes illness is a special kind of Litmus test. It’s futile trying to take up a role in someone’s life if they don’t have a space for you, whatever the reasons.

Lucy, now fresh on the dating scene, puts it perfectly, “I want to be up front with my Arthritis; if they wanna run away it can be over and done with quickly.”

In her opinion Coeliac is easier to deal with, but on occasion, it can be the canary in the coal mine. “Some guys act like it’s such an effort to cook a nice meal with substituted pasta. When I meet men like that I don’t bother pursuing it. If they can’t be bothered with cooking new things, how the hell will they cope with my bad days when I need help getting into the shower?!”

Photo by Marcelo Leal on Unsplash