The Advantages of Having My Partner With Me at the Hospital

For the past two-plus years, I’ve had to be alone because of COVID-19 for every hospital appointment for my idiopathic pulmonary arterial hypertension (PAH).

A year and a half ago, I began a new relationship — so until very recently, my partner had never been to an appointment with me.

This was difficult because not only did I wish I could’ve had his support in those appointments, I worried that because he’d never seen me in the hospital, my illness didn’t feel real to him. That is the problem with invisible illness; humans are very visual, and if we can’t see something, we can pretend it doesn’t exist.

I’d been desperate for my partner to accompany me, so with every appointment we would ring up and check if the hospital  had changed its policy yet. We were disappointed when every time, we were told no. This was hard to accept when everything else in every other sphere of life seemed to be back to normal.

After receiving an appointment letter a few weeks ago, we tried our luck again. This time they said I could bring someone.

I was really happy, but at the same time slightly nervous. I was so relieved that I would have someone to distract me in the waiting room, squeeze my hand during my consultation, and debrief with me afterward (without my having to remember and report back what was said). It makes a world of difference having your comfort person there on an anxiety-filled day.

But I was also scared of what my partner would make of it — and if it would change the dynamic of our relationship. My partner has been so supportive when it comes to my PAH throughout our relationship, so I knew he would be amazing. But I couldn’t help but wonder if maybe seeing me as “sick” for the first time would change anything.

I’m happy to say that it turned out to be a very positive experience. One invaluable benefit of having my partner there with me was that he could help me ask questions. I tend to get quite flustered and forget to voice what I’d intended to ask.

My partner and I had discussed beforehand two key issues for which I wanted answers. These were scary questions regarding my future treatment that had been hanging over me since my diagnosis in 2017. It’s funny that I still have questions almost five years in, but I think I was just in survival mode for the first few years. With my partner by my side, I felt more confident and ended up having these much-needed conversations with my consultant.

As for my partner’s experience, his presence may have made my disease more concrete, but perhaps that was needed. My condition has always been a mysterious, unknowable thing for him. For so long he was frustrated that I had to FaceTime from the hospital alone, and he felt quite helpless being shut out from that world.

But now, he says, he’s happy he can be more involved in my healthcare, and I couldn’t agree more.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.