Why Setting Boundaries Is Essential When Dealing With PH

Jen Cueva avatar

by Jen Cueva |

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Do you struggle to create boundaries to protect your health? Do others say that you are using your chronic illness as an excuse? If so, you are not alone.

Learning to say no and creating boundaries have always been a struggle for me. But after being diagnosed with pulmonary hypertension (PH), I realized that I needed to protect my health. My energy is limited, as described by the popular “spoon theory.” I can’t waste my valuable spoons, which represent my energy levels on a given day, on things like guilt and drama.

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In the book “My Life as a Doormat” by Rene Gutteridge, I can relate to the main character, Leah. Her struggle involved her boyfriend, who I am convinced is narcissistic.

For me, this happens most with outside relationships. Those who know me well know that I like to keep the peace. I prefer happiness and don’t do well with drama, because it preys on my health.

While reading this book, I found myself shaking my head as I related to Leah and her goal of avoiding conflict. Unfortunately, living with PH while trying to please everyone around me only adds to my daily stress.

This additional stress causes exacerbations of my PH symptoms, which include chest pains, increased shortness of breath, and exhaustion. Attempting to please everyone around me can also cause my anxiety levels to soar. As a result, my overall psyche is affected.

Growing up, I was often referred to as the “good” or “nice” one. But after my PH diagnosis and the resulting strain on my body, I learned that it’s crucial to put myself first.

Working with my therapist, we discussed this trait. She reminded me that I could continue to be kind and keep my big heart while making myself a priority.

Before, I would get nervous and stressed when I had to decline invitations from family and friends. Making matters worse, I learned that some had suspected I use my PH as an excuse. When people don’t understand my situation and make hurtful comments, it’s challenging to stick to my boundaries.

Anyone living with a chronic illness must create boundaries and stick to them. This protects our overall health. Finding ways to work through this struggle can be exhausting. I’ve worked for about two years with my therapist to try to quiet my negative inner voice that causes guilt or shame.

Have you felt at times that you need to prove to someone how sick you are? Well, it’s not our job to prove this. Our job is to create boundaries and to ensure that we communicate our needs to protect our health. That alone can be physically and mentally draining.

Feeling like we need to do it all, despite how we are feeling, is difficult. Taking a less is more approach while creating boundaries can help. Remember, other people’s opinions of you are just that. You are not dramatic or needy when you set boundaries.

Communicating our needs and boundaries can benefit us. Like Leah, I am working on making my emotions and opinions a priority. Reminding myself daily that self-care is not selfish is helpful. You can do the same, because your health is worth it.

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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

Carole Sturgis avatar

Carole Sturgis

Great and very truthful column. I found it easier to just drop relationships with people who didn't "get" my situation rather than feeling pressured by them. Might not be fair to the ex-friends, but has greatly improved my health.

You are a great writer and inspiration to readers - keep up the good work.

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Kathy Green avatar

Kathy Green

I was always called “the peacemaker” before PAH. After so many negative comments from family members and friends, I knew I had to let the negativity go in order to get through every day. My life has never been so peaceful and making this hard decision has helped me to see how important this decision became as my health has declined! Thank you all for your beautiful and meaningful stories. I love them all!

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Jen Cueva avatar

Jen Cueva

Hi Kathy,
I am sorry that you, too, have had to let go of family and friends. It is one of the most difficult decisions, but our health and body will appreciate us. The negativity that you mention only adds to our stress. WE all know that PH doesn't like stress.

Kudos to you for making the decisions to improve your health and put yourself first. We are still peacemakers, just trying to make peace with our bodies, most days.

I appreciate your kind words of encouragement.

Thank you for reading.

Kindly,
Jen

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Jen Cueva avatar

Jen Cueva

Hi Carol, thank you for such kind words of encouragement.

I am sorry to hear that you, too, have "dropped" relationships. Kudos to you, although at times, some of these dropped relationships take a toll. But, it certainly is for our health. We deserve to put ourselves first.

Thank you for reading. If you have not yet joined our PH news forums, we would love to have you. I am a forum moderator there, and we have some amazing members.

I will share that link here.

Thanks for writing, and I am grateful for your support.

Kindly,
Jen

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Gailla Deiters avatar

Gailla Deiters

Wow! Thank you Jen for this well written and expressed article. It has helped me to see I'm not the only one with these feelings. I also appreciate that you mentioned you have PH not PAH. Please excuse me, to the PAH patients out there, but I was going to unsubscribe to this forum as it's always about PAH despite the fact that there are other causes of PH. I'm in fourth stage heart failure and on oxygen at 63 years old. My personality is as you expressed. Your article has empowered me to not feel guilt for stepping away from 'friends' that are energy vipers. I appreciate that you said we do not need to prove our illness to others. I needed to hear that too! I experienced something that proves the validity of keeping our stress at a minimum. In April I had a right and left heart cath at the same time. The cardiologist had a catheter from my wrist to the left side of my heart while my pulmonologist had a catheter from my neck to the right side of my heart. I'm completely awake for the procedure which as anyone that has had tis procedure can attest is quite difficult in itself. However halfway through my arterial artery in my arm with the catheter started spasming. It was very painful. I had tears running down my face. I told the doctors that the pain was really bad. I was given Fentanyl. Later the doctor's talked to my husband and I. The stress of the pain caused my pulmonary wedge pressure to jump from 49 to 65! They impressed upon us how detrimental stress is to me. So yes we must avoid stress as best possible as it will not only zap our energy but also shorten our life.

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Jen Cueva avatar

Jen Cueva

Wow, Gailla,
I am sorry about the painful spasms that you experienced during your right and left heart cath. That must have been horrible for you. I bet this really scarred you from having that done.

I am happy that you could relate to my column about boundaries. Too often, we tend to guilt ourselves and add additional stress to our bodies. It is not fun to get rid of so-called friends, but those vampire suckers need to go. Like you, we all need to remind ourselves how much stress truly adds to our PH and symptoms. WE deserve to pout our health priority.

Thank you for reading and your kind words of encouragement.

Kindly,
Jen

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Rene Gutteridge avatar

Rene Gutteridge

Hey Jen! I loved your article. Though I don't suffer from PH, I am chronically ill and you are absolutely right on all fronts. I hope people read this and take it to heart. From experience, I know that pushing the boundaries of any chronic illness can cost you a lot more than you're prepared to pay.

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Jen Cueva avatar

Jen Cueva

Hi Rene,
As you mention, you don't have PH but other chronic illnesses; we are often different but struggle through many of the same things. It's not easy to set and enforce boundaries, but we must do it to protect our health.

I am happy that you could relate and grateful for your feedback.

Thanks for reading.

Kindly,
Jen

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Phoebe avatar

Phoebe

This was just what I needed to read. I have tackled PH with great positive attitudes and care.I have learned your words though I am turning 80,and still have plans to keep going. I live with a wonderful man,who's health is fragile,but we both have had to accept boundaries he is remarkable and we cherish what time we have. His children and we are kind,living and caring. My daughters are incredible too,but I see ho one of them needs me to set ore boundaries. Still thinks I'm sweet 60-70as I have lead a very active life. The soul and energy level need more running up,but I,be learned. I can be grateful so easily for all I do have. Thank you for this wonderful post!! Keep well and enjoy anything you want or can do.letting the Gardner help with my choices,but keeping my back yard flower pots,as an example,bring tremendous joy. Eating simpler meals is jyst fine. I can place steam vegetables in a beautiful dish. Sitting besides my chair,my sweetie,my oxygen tank and I are just the best of friends. Pretty
fresh flowers are a must too.
Best wishes to us all!
Phoebe Bryan

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Jen Cueva avatar

Jen Cueva

Hi Pheobe,
Your post shined with our positivity and gratitude for life! I love it!

We certainly can set boundaries but also enjoy things every day. I find the smallest things matter the most. As you mention, simple meals, fresh flowers or veggies, and family that love and care for us are most important.

I love that you mention you and your oxygen tank are best of friends.

If you have not yet joined us in the PH News forums, I would love to have you. I am one of the form moderators there, too. I will share the link here if you care to join.

Thank you for such a positive and overall optimism, a well as your words of encouragement.

Thanks for reading.

Kindly,
Jen

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