Raya Mynot has lived with PH for most of her 23 years, and worried she’d never find someone to accept her for who she was – until she met Jade. Now celebrating a year together, she reflects on the difference their relationship has made to her life and explains how they make it work together.

PUBLISHED APRIL 2024

“Being in new relationship can be daunting as it is, however, when having something like PH it can be even more nerve-wracking. Having to tell that person about having PH and letting them know you find some day-to-day activities challenging can be pretty hard – especially when that person is someone that you hope will like you, or that you want to make a good first impression with.

One thing I’ve learnt on this journey is that the right person will come along, and when they do, they will love you for exactly who you are, no matter what.

Me and Jade have now been together for a year. Over that time, we’ve learnt to manage my PH really well and now it actually doesn’t affect our relationship in many ways at all. Jade has been amazing with everything.

I learnt that education is key. I’ve educated her on everything I possibly could, and I even brought her along to a PH appointment day at my specialist centre pretty early on in our relationship.

Jade really took everything in and wasn’t afraid to ask any questions. Even now after a year she will still sometime randomly turn around and ask a question, and I love that she feels so comfortable to do that. I will always be happy to answer any of her questions.

I think one thing that Jade needed to get used to was doing things at a ‘Raya pace’. When we are walking together, sometimes I have to remind her that she’s doing ‘Jade steps’, and she’s practically pulling me along behind her. We always have a giggle about things like that.

Jade has also taken on all of the medical things so well. When I’m not well she knows exactly what to do and that was something she picked up so so quickly. I always say she’s lucky because she gets to be more then a regular girlfriend- she gets to be medically trained too!

Jade knows I struggle with the cold weather too, so recently we haven’t been doing a lot. She actually also bought me an electric hot water bottle, so I’ve been using that non-stop. With the cold weather, we been doing movie nights with lots of blankets and cuddles.

Having Jade around has given me a lot more independence. She is insured to drive my car (I’m still doing my driving lessons) so it allows us to be able to go out when mum is at work. I rely on mum a lot less with Jade. We love going to the cinema for a little date night, and its perfect for me because there’s no walking involved and its always warm in the cinema.

It has been really nice to be able to have that time with Jade. We always make sure that we have the oxygen with us incase I need it. It can obviously get quite heavy, so Jade is more then happy to carry it.

When we are out, most of the time we park in a disabled bay so I don’t have to walk very far and it’s easy to get the wheelchair out if I need it, but if we park too far away, Jade gives me a piggyback, and it just looks like we’re joking around together. And because I’m really small it’s so easy for her. She will also always push me in my wheelchair too which she loves doing!

Jade has really helped me as a person too. With PH I get quite anxious to go places or be out for a long time, but when doing it together its so nice to know that I’m safe when I’m with her, and she’s there to get me out of a situation if I’m feeling unwell or anxious. It’s also really nice because like me, Jade prefers a cozy night in over going out any day!

So we always have some special ‘home date nights’ where we watch a movie with our favourite snacks, we make homemade pizza, and we sometimes do little crafts together like diamond painting, embroidery or crochet. These have actually been some of our favourite date nights which is so nice because is not what you would call a typical ‘date night’!

I honestly can’t thank Jade enough. It takes such a special person to be able to understand PH and handle things amazingly when in a difficult situation, and Jade does it so perfectly.

I always used to stress that I wouldn’t find anyone that I would want to spend my life with, but honestly those type of people come around when you least expect it, and its all worth the wait when you do find your person.

Don’t be afraid to show people the real you, because that person will love you for exactly who you are when you find them.”