A virtually perfect connection: dating and cystic fibrosis

Mahi: It was kind of nice having that in common and speaking to someone that understands it. Obviously at that point dating was completely off the table. We decided to stay friends, because it would be nice to talk to someone who has it. I have no other friends with CF. 

Oli: There was no definitive moment where we decided to stay in contact, it just seemed to naturally happen.

You’ve remained friends despite not being able to meet. What challenges come with trying to be friends with other people with CF when you have the barrier of cross-infection in the way?

Oli: The main challenges with trying to be friends with other people with CF is that you can never meet face to face. I have spoken to a few people with CF throughout my life, from a distance, and sadly most of them have died. In spite of this, I would absolutely encourage those with CF to connect with others in the same position as it can be enormously helpful and comforting. 

Mahi: Oli is my only friend with CF, and we can only chat through text.

I kind of make it a point not to make friends while in hospital. When I was little I did become friends with another little girl with CF, but sadly she passed away. Cross-infection rules were in place and the nurses would separate us – if one of us went to hospital school that day the other one couldn’t, so we would take turns. They would only let us play if we stayed on opposite ends of the corridor and rolled a ball to each other. But we used to sneak into each other’s rooms and colour together. Since then I’ve been reluctant to make friends with other people with CF. 

What’s it like dating when you have CF?

Oli: I only started dating properly after my transplant because I was just too unwell before, so I know my experiences will be different from a lot of other people with CF. Dating with CF is same as it is for anyone else, but at some point you have to bring it up and reactions to that information can vary. I’ve gone about it in loads of different ways.

Mahi: In the past I did kind of used to hide or not mention it if I could, but as I’ve gotten older I just come right out and say it, like on the first date or while I’m getting to know someone. I used to be quite self-conscious about it, but I find it best to be open and up front about everything, because it is a big part of my life.

Also there are things that I do that others don’t when I’m on a date. For example, when I’m eating or after a meal I whip out a container and count out my enzymes and have to explain things, like what I can and can’t eat. With guys that smoke, I always have to explain they can’t smoke around me, and I make them stand away from me while they do it. Also I cough and get out of breath while I’m walking around. I don’t necessary notice it, but sometimes the person I am with does.

Oli: If I wasn't 100% sure about a date, I wouldn't tell them about my condition. It was easy for me to hide it because I had my transplant at an early age, so I don’t show any obvious symptoms. Unless they saw me take Creon before food, they wouldn’t be any the wiser. Other times I have been very vague on the matter and simply said I had an operation when I was younger which resulted in a poor immune system.

It was always best to tell someone in person. That way, they wouldn’t google CF before I had told them the reality of my situation.

Mahi: People tend to take it one of three ways when I tell them I have CF. They either go and do research on it, googgle everything about it. And they freak themselves out, because they read about all the doom and gloom and worse-case scenarios. They come back to me all scared and feeling sorry for me, crying how I am going die, and I have reassure them to chill, I’m good.

The other type of reaction I get is on the opposite end of the spectrum. Even if I tell them, they don’t acknowledge it, or care to understand it. They’ll just act like I don’t have it, or won’t understand when I am sick, or in hospital, that it’s not a cold that I can just walk off.

And then there’s some people that acknowledge it, don’t freak out, and are willing to know more about it.

Have you had any bad experiences dating with CF?

Mahi: One bad experience that does stick out, was this one time I was dating someone and we had just decided to be a couple. I ended up being admitted to hospital the next day. I had been struggling with my health all summer, I was in and out of hospital a lot, by this point I was completely fed up and unwell. The guy just disappears, no texts, no phone calls, nothing.

I sent out a text to a bunch of people happy that my lung function had finally started to go up. He finally responded with, “good that it’s gone up, back with my ex now.”

Being stuck in hospital, sick and getting dumped in a super callous way, SUCKED. You kind of want to deal with one thing at a time, but you get no breaks with CF. I wanted to be anywhere else other than that hospital room, not surrounded by nurses and doctors, people coming in and out of my room and machines beeping at me, with no privacy.

Oli: By far the most common problem I came across while dating was the emotional problems experienced by my partner. In one case, a girlfriend’s family were fully aware of my condition and the reality that my life might be shortened by it. They would often raise the fact that it would be really hard for her when and if I were to die early, and how ultimately she would be left on her own. Although I didn’t like that fact that they were so insistent about it, I understood that their fear came from a place of love. Her family only wanted her to be happy and in their eyes, I was not the person that could give her that future. 

I’ve also experienced potential partners dismissing me after I’ve opened up about having CF— one of whom actually worked in the medical sector and shared mutual friends. We never spoke again, and for all I know she may have felt we were a bad match for other reasons, but it did play on my mind that she may have ducked out because I have CF. I don’t blame her for that. Relationships are hard at times and CF can make them harder. 

In one case an ex couldn’t deal with me having my nebuliser in the same room as her because the loud noise would give her a headache. Other times, she found my treatments and appointments to be a nuisance and would often make me feel guilty about the fact that if we ever wanted to have children she would have to have to undergo invasive IVF therapy because of my inability to conceive. After that relationship ended, I suffered for a long time with feelings of guilt and shame for the sacrifices my partners would have to make on an account of my condition, feelings that were made worse by the fact that even if I wanted to have children alone, my status as a single male would make me automatically ineligible for the funding to start IVF myself.    

What about good experiences?

Mahi: Once I had a first date whilst I was in hospital. We had things organised and I got admitted, and rather than cancel on me he came up to visit me, we sat on my bed and chatted, watched a film while I was hooked on my IVs, then we went out for food after.

He wasn’t put off by the bruises, or the tube in my arm or the bricanyl pump in my belly or the moon face I had because of the pred. It was a really nice fun surprise.

Oli: One of the happiest experiences I’ve had with dating with CF was meeting and getting to know my current partner, Kate. We met on Tinder and went for a walk in a local park, and after only a few hours with her I felt so comfortable that I told her about my medical history without hesitation, thinking that if it were to put her off me altogether, I would rather we know now in order to avoid any disappointment. I had never done that on a first date and to my delight she was completely understanding and curious— it didn’t shake her one bit.

As it turned out, she and her family were highly prone to breast cancer and she told me it was likely that she would have to have a double mastectomy sometime in the near future. Soon after, she had a real cancer scare which ultimately brought us closer together. When it came to Kate, CF did not stand in the way of our relationship. We are currently planning our future together, looking forward to the all the usual milestones and eventually starting our own family.

Find out more about 'Five Feet Apart,' the issues covered in the film, and how we can help to support your conversations here.

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