I’m Struggling with the Misconceptions of PH

I’m Struggling with the Misconceptions of PH

Pulmonary hypertension (PH) is a complicated disease. I am the first to admit that. I live in the mountains and the valleys of PH life daily, and often I am thrown curveballs.

While it is understandable that others around me cannot comprehend the impact PH has on my body, dealing with these misconceptions is a continuous struggle for me.

Unfortunately, living with PH can be isolating due to its complexity. As someone diagnosed with a rare disease, I often am misunderstood. I get it; honestly, I do. PH is not a disease that most are familiar with. It’s not straightforward, and it’s difficult for others to understand my daily struggles. As a result, I often isolate myself on days when I feel the worst.

Most people — myself included — tend to think that when someone close to them is diagnosed with a chronic illness, there will be others close by to offer support. Sadly, this is not always the case. When I was finally unable to enjoy activities I did in my days before PH, people started disappearing from my life.

Now, I might be out doing things I enjoy with friends and family one moment, while other times I am down for days trying to “recharge” my battery. PH symptoms and side effects of medications can increase without notice. As you can imagine, planning is challenging.

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When my health changes rapidly, it’s frustrating. If I am frustrated, those closest to me probably feel frustrated, too. While I have been accused of “using my PH” to cancel plans, this couldn’t be further from the truth.

My heart breaks when others stop inviting me to do things. I have been told several times that “this is not a place for a wheelchair.” The worst is when I am not told about plans. It makes me want to hide as my emotions take over once again.

On the other hand, I will not apologize when making my health a top priority. This often requires me to choose my events carefully. I often rest ahead of an activity I plan to attend. But sadly, these plans can be shattered, too. It is such a letdown when this happens.

Because many people are uninformed about PH, I continually try to educate those closest to me. The Pulmonary Hypertension Association offers an informative PH library to help educate patients and families. For those who are supportive and compassionate, I am grateful more than you can imagine. These are the relationships that I focus on growing and nurturing.

When tragedy strikes, we often discover who our true friends are. Unfortunately, I cannot count how many friends I have lost since my PH diagnosis. As sad as this may be, having fewer friends who are more reliable is more important. Losing connections is tough. But misunderstanding and lack of compassion take a toll on my mental well-being.

I have always been the happiest around my closest friends and family. But the ups and downs the last 14 years have been hard on my social life. Thankfully, I have people who are supportive and enjoy hanging out with me, even if it’s a pajamas kind of day.

I also am grateful for my many online friends with PH. It helps to talk with them, as we often deal with many of the same struggles.

I enjoy participating in Pulmonary Hypertension News forums. This is a close-knit group with whom we share our experiences and offer support. It’s truly an amazing group that offers peace of mind and joy, and a sense that others truly “get it.” Relating to others going through the same journey is a huge benefit to my well-being, and I get to help others in the same way.

Battling PH is my everyday reality. My goal is to educate my closest friends and family, as I want them to have a better understanding of the disease. I do not seek pity, but rather I want my friends and family to support me.

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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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

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5 comments

  1. Jimi McIntosh says:

    Thank you for clarifying how it feels to be alone and not having the social support that binds is to others. I feel like an AIDS patient had to have felt years ago.

    People and family avoid you, even when you do not discuss your illness, it is like having a real
    Bad case of the flu, with a side of Ebola. My true friends are still around, the fair weather ones have moved on, including
    Those that we have given food and shelter when they hit the bottom.

    This too shall pass, I feel like running an ad to make people aware of PH. We are still people too

    • Jen Cueva says:

      Thanks for reading, Jimi. It sure is some better now compared to when I was diagnosed over 14 years ago.

      It hurts when we lose those we were close with Pre-PH. We keep up the PHight and do the best we can each day. We are still people, too! So many treat us otherwise.

  2. Jeannie DiMauro says:

    Although my ‘version’ of PH is less serious than many, when combined with several other serious, chronic diseases… and old age… it is quite difficult most days. I have long since given up completely on expecting others to understand how a person can look okay and still be very sick… or to understand that just because I have a chronic & untreatable (for me) disease, I am still allowed to enjoy life. After I decided I didn’t give a flip about what others thought, I actually felt much less depressed. Like the guy above said, I’ve been more than good to people all my life and although it came as a surprise (to me) when people kinda wrote me off when I was no longer useful TO them, I know my own value and they can just go away… glad to be shed of most of them.

    • Jen Cueva says:

      Hi,Jeanie(princess),thanks for reading. I try not to let these things: get to me”, but some days it really is a struggle. But, as you mention, others do not think we should live our lives. We are sick, not dead. Sending you big hugs.

      • Thank you, Jen… you are a sweetheart and you deserve every good thing that comes your way! Wish we could all have another PH Slumber Party at my house… while we’re all still alive… lol… and kicking it. 🙂 Or maybe we could all meet at a central location hotel… I dunno… this new puppy dog has worn me out… and made me realize how little energy I really have. 🙁

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