Building and Maintaining Relationships Are Challenging With PH

Jen Cueva avatar

by Jen Cueva |

Share this article:

Share article via email
i feel overwhelmed | Pulmonary Hypertension News | primary care physician | Banner image for

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.

Recommended Reading
| Pulmonary Hypertension News | banner for

New Year, Same Chronically Ill Me

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. 

Comments

Susan Knight avatar

Susan Knight

Thank you, as I read this is morning, I relate. For me, it's extremely difficult to continue with hope and a positive spirit. I'm so tired. It's been 22years on O2 24/7, with Ph added 5 years go. I think the most difficult times for me are when friends that have accepted me, don't really understand my progressive limitations. (particular now with Covid, that has isolated me even more)...I probably whine more and resent their lack of compassion...oh well...thank you, for letting me have my "pity party" morning...Life is not a spectator sport...and I need to breath and relflect on all of my past blessings...Susi

Reply
Jen Cueva avatar

Jen Cueva

Hi Susi,
I'm sorry that you have found such struggles with relationships. It certainly can impact our overall health when our friends and loved ones don't understand or accept our limitations. Unfortunately, you're not alone with these feelings. COVID certainly had made this even more of a challenge.

We all need to have those "pity parties," but we also must feel those emotions and then move on. AS you mention, reflecting on our blessings helps us move forward.

Thank you for offering your feedback and reading my column. If you haven't yet joined us, we would love to join us in the PH News forums. I co-moderate there and think you may find some support.

Stay safe and keep moving forward.

Reply
Sandy Greenberg avatar

Sandy Greenberg

I can so relate to how much PAH and O2 have changed my life. My husband recently filed for divorce and told many friends and family members he could not cope with the fact that we could no longer fly and travel. This is not the life he wanted in our senior years. Although our divorce is not final, he has moved in a younger healthy lady (house solely in his name). It is all just so much to cope with. (My pitty party morning).

Reply
Jen Cueva avatar

Jen Cueva

Hi Sandy, I'm so sorry to hear about your divorce. This must be highly devastating. I can't imagine how difficult this is for you. If you haven't yet joined us in the PH News forums, we would love to have you join. I help moderate the forums and am confident that you'll find some support there. I help moderate the forums and am confident that you'll find some support there.

Stress certainly impacts our PH more than most think. This must take a toll on your emotional and physical health. How are you doing?

I wish I had better words to say, but I'm sorry that you're going through such a difficult season.

Take care and stay well.

Reply
Caroline Kaye Tabor avatar

Caroline Kaye Tabor

I've been on 02 for 14 years now. And now that I am 77, it's harder to carry it around. And having a hose in my nose is not exactly attractive. I was born with serious heart trouble in 1945 and they told my Mum I wouldn't live past 6-12 months of age, but then I made it to 41 before they found a surgery that would help me. And it DID help me and, although I have had more surgery and valve replacements, I am still getting up every morning, contacting friends, getting out of the house, etc. My Mum said I should focus on what I CAN do and not fuss about what I cannot do. So I am thankful that I made it his far, thankful for the 02 that has kept me going, and I celebrate every morning and every birthday that comes along.

Reply
Jen Cueva avatar

Jen Cueva

Wow, Caroline! You offer such words of hope and encouragement. I agree that we must focus on those things that we CAN do, not what we are limited or can't do. Your Mum taught you well, and it continues to show.

Getting up every morning, getting dressed, and making a point to get out of the house can also impact our overall health. Thank you for reading g and for your words of wisdom.

If you haven't yet joined us, we would love to join you in the PH News forums where I help moderate.

Take care and stay safe.

Reply
auntlizzie avatar

auntlizzie

Oh Jen, people can be so - what? - I don't know. Now with PH, some now treat me with kid gloves and wonder at me walking around instead of driving places. Others suggest I should sit down when I prefer to stand as much as possible to burn calories - yes truly. To encourage contact with neighbours, how about decorating your oxygen equipment and make it a talking point. Some people are unsure of how to approach when they see something a bit different. I built a gnome village in my front garden which is a bit of a jungle anyway. Local children love it - so I get to speak to the parents. I'm 80 years old and staying in as much as possible too - kind thoughts and love to you.

Reply
Jen Cueva avatar

Jen Cueva

Hi Lizzie,
I certainly relate to your experience from how others treat you. Decorating my oxygen bag instead of a boring black bag could be fun. I know others who have also fone that and named their oxygen, too. Creating such talking points would be helpful. I love that you made a gnome village in your garden; I would stop and enjoy that, too. That's so cool!

Yes, staying in except walking our dog, Sasha, and maybe longer walks when my hubby, Manny, pushes me in my wheelchair is about all we do outside. Well, that and me e-bike ride in the middle of nowhere to get some exercise and fresh air.

Thanks for reading and offering your feedback. Now, only if I was creative, stay tuned.

Take care and stay safe, my PHriend.

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.