Dating with pulmonary hypertension

Dating can be daunting at the best of times, and when you throw chronic illness into the mix, it’s understandable some of us worry about navigating the potential complexities of starting new relationships. When do I tell them I have PH? Will they see me differently? What if I have to cancel a date last-minute, because I don’t have the energy to meet up?

It’s easy for your brain to get bogged down with these thoughts, but opening yourself up to the possibility of things going well can make all the difference. After all, who knows what could happen!

Opening yourself up to dating

What if we viewed living life with a chronic condition as a strength? Psychotherapist Sophie Papageorgis has pulmonary hypertension herself and understands the challenges. This is her advice on shifting your mindset around romantic connections…

“Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.” — Glenn Schweitzer

“This powerful quote is from an author who has struggled with chronic tinnitus. What I love about this, is that it highlights that we are all the same. We are all on the same journey, and some of us have things lobbed our way that we could do without – like PH. It doesn’t mean we are ‘less than’, it just means that we have other difficulties to contend with as we progress through life.

Those things can leave us feeling battered, bruised (literally in some cases), different… all things that knock our self-esteem. And if our self-esteem isn’t great, we probably find ourselves thinking things like the following (and yes, this is an insight into my mind!):

“No-one will want to be with me”, “my life span might be limited and I don’t want to put anyone through that”, “I’m a burden” …and then some!

But you know what? Some of the most incredible people in life have gone through difficult experiences. They are the people with resilience, perspective, and a sense of what’s truly important. Those are amazing qualities that anyone would be lucky to have a relationship with!

What if we viewed living life with a chronic condition as a strength? Who says it’s a negative! People would be lucky to be with us, we’re pretty hardcore!

There might be worries about telling people who we’re dating about our health, but the ones who are worth sticking around for won’t be fazed by that. If anything, they’ll be the ones who want to be there and will build you up. PH is part of our lives, but it is not our whole lives.”

Can you really find love at the click of a button?

It’s not always easy to get out and meet people in traditional ways when you live with the symptoms of PH, which is when dating apps can really come into their own.

There is now more choice than ever when it comes to platforms, and some remain free while others carry subscription costs or charge for additional features.

You may choose to explore a dating site specifically for people with disabilities or chronic illness. There are a few based in the UK, including Disability Match and Enable Dating.

TIP: If you don’t feel comfortable creating a profile for yourself, you could try mysinglefriend.com – where someone close to you can do it all for you!

Online dating is a great way of exploring connections from the comfort and security of home and allows you to take the time to get to know someone before deciding to meet.

However, this type of dating can be challenging if you are sensitive to rejection, so it’s important to go into it with your eyes open.

For example, you may have heard the phrase ‘ghosting’, which refers to someone disappearing for seemingly no reason whilst chatting online – even when things seem to be going well. If you experience this, please do not automatically assume it is because of your illness. It happens to everyone at some point. The key is not to dwell on things like this – simply move on and count yourself lucky you didn’t get as far as meeting with that person, as they showed their true colours early!

The truth is, you do need to be prepared for experiences like this, and not everyone will be kind or honest in their interactions. Remember though, there are lovely people online too, so don’t let it get you down.

It can be really fun, and confidence-building, to chat with different people online. It won’t work out with them all, but you’ll come across some gems along the way and learn more about what you’re looking for.

Don’t forget to keep safe online:

• Avoid sharing personal information like your full name or address until you feel comfortable with someone and have met in person.
• Be vigilant for fake profiles or scams. Unfortunately, some use dating apps to target vulnerable people in the hope of extorting money, so always exercise caution.
• If you arrange a date, make sure you meet in a public place and tell someone you trust where are you going.

Real experience:

“I just let the moment happen”

Tracey Smith is 51 and lives in West Sussex. She split from her husband nine years ago, four years after being diagnosed with PH, and told her new partner about her health condition on their very first date. They have been together ever since…

“My husband had been having an affair, and as he left, one of the comments he threw at me was ‘I couldn’t cope with your illness’. It may have been a throwaway comment, but it’s always stuck with me, as he was trying to use it as a way of excusing his behaviour.

My children were 14 and 11 at the time, and I concentrated on being a single mum. About a year later though, I felt ready to meet someone else, but I wasn’t quite sure how. I spoke to some friends about it and decided to try online dating. It’s much more the ‘norm’ now but back then, in 2017, it wasn’t so common.

I went on a couple of dates from Plenty of Fish (www.pof.com), but I didn’t tell them about my health. There was something about chatting to Chris that felt different though and I told him about my PH on our first date. I wasn’t planning to – and I hadn’t given it much thought – but it just felt right at the time, and I also felt like I owed it to him to be upfront about it. The symptoms, like my breathlessness or getting light-headed, are not easy to cover up so I felt it best to be honest.

It did feel scary, as I didn’t know how he would react, but I just let the moment happen.  He reacted brilliantly though, showing an interest and asking questions about PH. And ever since, he’s always been able to look through it and accept that it’s part of me.

I did fell quite self-conscious of it all when we first started dating. I’d worry about getting up stairs when we were out and about together, whether I could walk at his pace, or whether I’d go dizzy in front of him. Even though I was totally honest with him about what I had, I still didn’t really want to ‘show’ him. Chris was supportive right from the start though. He even joined the PHA UK himself and ordered their publications and read up on it all.

I am generally very open about my PH with everyone, and I think that helped me when it came to telling Chris. It’s just the sort of person I am.

How would I have felt if Chris had reacted badly when I told him? That’s a very good question. It probably would have been a game-changer, because PH is obviously part of me and if someone can’t accept the PH, they can’t accept me.”

Real experience:

“Be patient… it’s worth it in the end”

Debbie Taylor, 41, lives in the West Midlands with pulmonary arterial hypertension. She had mixed experiences when she first started dating but has now met someone she feels fully comfortable with…

“My ex and I split before I was officially diagnosed with PAH but the symptoms had already begun. At the time we split our little girl was only two, and when I got my diagnosis I went straight onto the Hickman line. I was also in the middle of moving house, so there was a lot to deal with. It took a couple of years to get stabilised, and dating just wasn’t on my mind.

When I felt more ‘sorted’ I started to consider trying to meet someone and looked into dating sites. I was worried though about how the Hickman line would affect things, so to be upfront about it, I used photos on my profile that showed the line.

It was always hard to know whether to tell someone about the PH straight away or to leave it a while before bringing it up. But when the online chats turned to the subject of jobs, it normally came up naturally as I had to explain why I’m unable to work.

I didn’t go into lots of detail in these conversations, I’d just explain I had a lung disease but that it didn’t stop me from doing most things. I felt it was important to be upfront about my health as I didn’t want to waste my time (and theirs) by meeting up if it would be an issue for them.

I had mixed reactions from people to be honest. There was a lot of ghosting, and one man asked when I was going to die. I explained I could get hit by a bus the next day! I have to admit that some of the reactions I got did make me feel quite depressed, and I wasn’t feeling very confident about myself.

I eventually started talking to someone who is now my boyfriend, and I told him quite early on about the PH – but just the basics.  After a few more dates, I gave him more details about my medication and told him I was being assessed for a transplant. I also explained I went to my local hospice once a week, and that’s why I couldn’t meet up with him on those days.

I was conscious of keeping these conversations with Paul as positive as possible. I told him I could still walk and talk even if I couldn’t climb mountains or run marathons.

He was really good about it all and told me none of it mattered. It was reassuring as I had been really worried about telling him everything. It’s not like telling someone you have cancer, as non-one has ever heard of PH.

I spoke to my friends about it beforehand and they told me he’d stick around if he was worth it, and if he didn’t, it was his loss. It was really hard to know what to do for the best so I’m glad he reacted well.

By this time, I’d transitioned from a Hickman line to a nebuliser, and I’d time our dates around when I took the medication, so I didn’t have to inhale it in front of him. It was about three months before I became comfortable enough to do that.

I met Paul on the Plenty of Fish website (pof.com). The only other free one I found was Facebook Dating and that was full of weirdos! There are a lot of idiots on Plenty of Fish too, but you just have to go through them and be patient. It’s definitely worth it in the end.

Our first date was a couple of drinks at the local pub, and it turned out we live across the road from each other so it’s a small world! He said he’d seen me around and wanted to say hello, but he was too nervous.

We’ve been together about six months now and we enjoy date nights like the cinema or going out for food. We haven’t been on holiday together yet, but we’ve been looking at cruises as I need oxygen to fly.

Paul understands when I have my bad days and he’s absolutely fine with it all. He’s really supportive, and I share a lot with him now.

If there’s someone with PH reading this and wondering if they will ever meet someone, I’d say just be patient and it will come eventually. I’ve met a lot of girls with PH that have found relationships. It’s just a case of sticking around for the right one – and getting through the bad ones first if you need to. That can be a challenge whether you have PH or not!”

If you’d like to share your own experiences of dating with PH, please email media@phauk.org