Marriage looks a little different when living with a rare disease
My husband and I make a great team when it comes to my PH care
I have pulmonary hypertension (PH), which is difficult to manage, but it doesn’t affect only me. It also affects the people closest to me, including my husband, Manny, who is my rock.
Unfortunately, living with a rare disease can strain a marriage at times. When that happens, it helps to put yourself in your partner’s shoes. Many couples find that facing obstacles together can actually strengthen their bond.
Unless you’ve experienced having PH yourself, fully understanding what a partner with the disease is going through can be challenging. We PH patients need more rest than a healthy person does, and we might not always feel like going out to do things. PH limits our ability to work, do chores, and complete other everyday tasks. I try to compensate for lost time by doing several activities over the course of a day or two, when I feel capable.
In our relationship, Manny is the primary breadwinner and the source of our health insurance. That puts a lot of pressure on him to deliver, which I always try to be mindful of.
Working toward a better understanding
If your spouse or partner has PH, it helps to understand the disease’s symptoms, along with any side effects that medications might cause. Manny has accompanied me to most of my doctor’s appointments, particularly during the first 10 years of treatment following my diagnosis, which has helped him to better understand these things.
Learning about PH and the various treatments allows a partner to better support the other and communicate about it, making it easier to help out. For example, on days when I’m drained or my PH symptoms are flaring, Manny knows I’ll be stuck on the couch. He’ll step up to help by running errands and brainstorming meal ideas since I often battle nausea and don’t have an appetite. He knows that 7UP and Gatorade can be lifesavers for me. Sometimes, he’ll surprise me with a treat from the store, a small gesture that means the world to me.
It’s important to celebrate the small victories, which helps to boost confidence and can strengthen a marriage. For instance, we were thrilled when I found a treatment that keeps my PH pretty stable. We cherish every victory together, as a family.
Another important tip is to avoid focusing entirely on the illness. Instead, remember details about the person you fell in love with. A diagnosis does not define someone.
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.
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