“The diagnosis itself changed how I felt about my body. I went from leading a ‘normal’ lifestyle and having a job, to going into hospital and coming out in a wheelchair.
I felt it changed how people saw me, and how I saw myself. I almost felt like less of a person.
My husband and I were scared to do anything physically, in case I had a heart attack. We went a long time without making love because we were too scared to. It wasn’t just me thinking ‘oh god, what if I die in the middle of it?’, it was Pete wondering too if I would die on him.
We’ve always been affectionate with each other and would always hold hands whilst walking together. But in a chair, with Pete pushing me, we couldn’t do that anymore. Even conversation was made more difficult, as if it was windy, he wouldn’t be able to hear me.
That loss of intimacy felt hard. For the first year or so, all I wanted to do was be able to walk down the road holding hands with my husband.
When I had my Hickman line fitted things changed again, as I was so aware I had this thing hanging out of my breast. I couldn’t get away from it, couldn’t hide from it, it was just always there. I just had to accept it was part of me, keeping me alive, and I had to get over that hurdle. There’s nothing else you can do really.
We did speak together about how it was making me feel. Pete was always telling me I looked fine. Whether or not he really thought that I don’t know, but he was very reassuring, and that definitely helped me. Communicating with your partner throughout it all is massively important.
It’s been over five years now since my diagnosis, and we have more confidence with the physical side of our relationship. We just took it gradually and tried different things.
Take it slowly, do what you feel you can do, and if you feel breathless or rubbish, just stop. Try different ways, different positions that you may feel less breathless in, and don’t be scared of doing things. We were scared of my line being pulled out, but it’s not going to happen – unless you’re swinging from the chandeliers!
When I was first diagnosed, I thought that my physical love life was another thing that had been taken by PH, along with my job, independence, and everything else. But it does come back. I say it’s living a new kind of normal, but you need to give it time to become that. Remember you are still the same person, it’s just your health that has changed.”