Shocking True Story: Dating with a Chronic Illness

disclose your illness

(Part 1 of 3) my true dating with a chronic illness story and how my boyfriend discovered the truth about my declining health.

“How’d it go last night with the new guy?” the facebook message read. It was 10 am and I was just waking up after a long night out. I glanced at the clock that warned me if I didn’t rush through treatments, I’d be late for my flight.

My treatments consisted of albuterol, pulmozyme, and an antibiotic that I inhaled through a nebulizer in attempt to open my airways and curb some of the symptoms from cystic fibrosis.

“He kissed me!” I messaged back enthusiastically, tangling the tubes of my nebulizer around the electrical outlet. I hurriedly tried to hit the “on” button. I had three hours to pack my medications, finish treatments, and get on a flight to Texas. With my lung function diminishing, I knew I couldn’t reschedule this visit.

I would need a hospitalization soon. Dating with a chronic illness is not easy.

Admitting to my friend we kissed would put her head over heels with excitement. And also, that she’d have dozens of follow up questions. “Did he say anything about the salty taste? When are you going to tell him about cystic fibrosis? “

When to tell a potential match that you are living with a life threatening, chronic illness, is a tricky thing to navigate. In my early 20’s I was a corporate recruiter for a biotech and pharmaceutical recruitment firm. It was my job to contact upwards of 100 candidates a day and pitch them an open job, hoping at least ten candidates are open for an interview.

Recruiting and dating are eerily similar processes.

Recruiting:
From those 10 candidates, 3 were actively scheduled for a face to face interview, and one would land their dream career and I would land a commission.

Dating:
From 10 dating profiles, 3 were scheduled for a first date, and ideally one would turn into a relationship.

Keep in mind, the goal is not to get hired or married right away. The goal is to get to the next step in the process.

I never sought to make a perfect hire. I just wanted to give great candidates the opportunity to interview, knowing the dream job wasn’t too far off. By that same logic, the next step was just getting the next date. A series of dates, eventually a proposal. That’s how it works.

Only this isn’t recruiting. It’s dating with a terminal illness.

When we subscribe to a dating app, we know we need to put our best self out there. It’s like a resume for your personal life. You need the right photo, the best tagline (my tagline was: FACT: 3 out of 5 people aren’t the other 2), and show that you are interesting without seeming overly interested in them.

Crafting a resume and crafting a dating profile are eerily similar.

Recruiting: Search the resumes for the qualified candidate. Look for keywords on the resume.
Dating: Search for the most qualified, single men. Look for key values on the profile.

Recruiting: Print the resumes and highlight the best attributes of an applicant.
Dating: Print the profile and highlight the best attributes of the single guy.

Recruiting: Call the candidates that have the most highlighted marks on their resume.
Dating: DM the guys that seem to be the most compatible.

Recruiting: Repeat until you have an interview.
Dating: Repeat until you have a date.

Recruiting: 3 interviews and be prepared for an offer.
Dating: 3 dates and be prepared for (well nevermind that part).

“Did he comment on the saltiness?” she persisted with her questions.

With cystic fibrosis, our skin tastes salty. In fact, that was how they diagnosed the disease back in the day. There was even a poem about it during the middle ages.

“Woe is the child who tastes salty from a kiss on the brow, for he is cursed, and soon must die.”

“No, I made him take me out for margarita’s so he wouldn’t notice.” I shared with her. I have to admit, clever strategy on my part.

Salty tasting skin is a sign of the genetic disease, cystic fibrosis. If you kiss someone and they taste salty, they may have the invisible illness, cystic fibrosis. Keep reading my dating with a chronic illness story below.

“Scandalous! Well played… so now what? When are you going to tell him?” she persisted.

It wasn’t the next step. He would find out about cystic fibrosis on his own time. He barely knew my full name and with spelling as unique as mine, he could google me if he wanted to. He didn’t google, I didn’t share.

Before I felt like sharing my deepest insecurity, I had to face my own disease. It’s easy to hide behind an app, it’s easy to not share the skeletons in your closet, it’s easier to pretend it’s just about numbers and keyword searches… in reality, dating while you may be dying is about confronting the question, “will anyone love me the way I should love myself?”

And then there’s these thoughts when you’re dating with a chronic illness:

  • “Am I worthy of love?”
  • “Am I worthy enough of love to make up for the pain I’ll put my loved ones through?”
  • “Is it selfish to take someone’s heart if there’s a realistic chance I won’t be around for very long?”

As I begin to allow my mind to wander to the places that I’m not comfortable with, I remember I need to get packing . The flight from San Diego to there is roughly 3 hours, so I will need to leave out my diabetic supplies and have a snack before I board. I should also make sure my enzymes are in the carry on. And the thyroid meds, just in case my luggage is lost.

I tell my girlfriend I have to log off and frantically start packing for the flight.

PING.

I hear the familiar sound on my phone and laugh to myself how persistent she is in finding out the details of my romantic rendezvous.

Except I look at the phone to see it’s him. It was the guy I knew I was falling for. Except, he didn’t know about my health. How do I tell the guy I am dating about my chronic illness?

“I just googled you” the text read. “We need to chat.”

dating with a chronic illness and how my boyfriend found out the truth about my health
How my boyfriend found out about my rare disease

Stay tuned for Part 2 and a special post from HIM on what was going through his mind as he found out via google about my condition.

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