Building and Maintaining Relationships Are Challenging With PH

When I walk my dog around my new neighborhood carrying my oxygen, my neighbors seem to look at me like I’m an alien. Many stare and gawk, as if they’re speculating about what my invisible illness might be, since I otherwise appear to be a healthy young woman. 

How do I divulge my true identity as a young woman with pulmonary hypertension (PH)? I may be sick, but I’m not contagious, and I don’t bite.

My husband and I relocated late last year from Texas to California, and for the first time in my life, I’m experiencing what many people with disabilities must deal with every day. I’ve gotten these awkward looks before, but in public. In my old neighborhood and among my group of friends, I was comfortable and could be myself. I crave that now.

As a child, my family relocated often because my parents worked in the oil and gas industry, but relationships came easy to me. Most of my friends were “military brats” who could relate to moving around a lot, and I would always come home from my first day of school excited to talk about how many new friends I’d made.

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Now I’m trying to make new friends in a new place with a disability — and it’s not easy. This disease has significantly affected my relationships and my ability to make and keep them.

It’s been said that most friends are only in your life for a season. I found this to be accurate after I was diagnosed with PH in 2005. Only a few friends stuck by my side, oxygen and all. I cherish these true friends.

The give and take of relationships

I have built new friendships within the PH community that I never would have without my disease. Working a few hours per week writing this column and co-moderating the Pulmonary Hypertension News Forums has also given me the opportunity to form fantastic relationships with the people at Bionews, the parent company of PH News. They’re the best thing to have come out of having PH.

After I left my nursing job, I missed that daily interaction with colleagues, many of whom had become close friends. So Bionews has been a lifesaver for me, fulfilling both my need to help and support others and to connect with people.

Feelings of guilt, sadness, resentment, and isolation are not uncommon within the PH community. We can easily be disheartened by the realization that life as we knew it will never entirely be the same. While I enjoy supporting others, I must focus on my existing relationships to find the energy to be a nurturer.

My husband, Manny, is my superhero. He goes above and beyond, despite seeing me at my worst. But our roles have shifted now that he is my caregiver, and we have learned to more effectively communicate our needs and work together. PH takes a toll on our marriage, and I’m grateful for his comforting touch that reassures me that I’m not dealing with this disease alone.

My daughter, KK, has also had to step up to care for me. Some days, it seems our roles have reversed, which has weakened our relationship in some ways. She’s taken me to do errands when I feel exhausted, and reminded me how to do something that I once taught her. I wish I could take this mental and emotional burden away from her.

Similar changes have also happened in my roles as a daughter and a sister, as I shared in this open letter to my family.

The COVID-19 pandemic has also made it difficult to make friends. A number of colleagues and neighbors have invited Manny and me to outings that we declined to attend because of the surging omicron variant. I am worried that they will grow tired of our declined invites and stop asking, as several friends did after my PH diagnosis years ago.

Relationships can be challenging, as they require time and energy to create and maintain. But they are also a building block for a fulfilling life. My relationships have always had a profound effect on my mental and emotional well-being, and it’s been difficult trying to find my place in a new state during a pandemic as a person with a disability.

I know I’ll eventually find my tribe — a group of friends who love me, PH and all. 

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.