Facing fear and anxiety is normal with pulmonary hypertension

Fear and anxiety are often among the first emotions we experience after being diagnosed with pulmonary hypertension (PH) or other rare and complex diseases.

Recently, my therapist asked me, “Did you know that naming your fears is the first step in preventing them from controlling your mind?”

Despite having heard and discussed this idea before, particularly during my nursing days when I cared for others, now it’s my turn to listen. Supporting others has always felt more natural to me than receiving support. Even though I was diagnosed with PH nearly two decades ago, I still struggle to accept help, especially on my tougher days.

Various fears persist in life with PH. Concerns include complex symptoms that may lead to additional health struggles, such as chronic kidney disease or congestive heart failure. PH can impose limitations and disabilities, and while there are ways to manage symptoms, a cure remains elusive. This disease is unpredictable, often reminding us of its presence when we least expect it.

Many of us experience fear and anxiety because we feel threatened by something we don’t fully understand and can’t control. Can you blame us?

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Fears and anxieties we share

The fears and anxieties we face are often as unique as the PH community itself, reflecting the varied ways the disease affects each of us. At the recent Pulmonary Hypertension Association International Conference, I chatted with a group of PHriends — a mix of long-term patients, caregivers, and newcomers with recent diagnoses. Here’s a glimpse of the top fears expressed during our heartfelt conversations:

1. Loss of independence: We worry about becoming reliant on family and others. For someone like me, who’s used to being the caregiver, asking for help can be physically and emotionally draining. It’s a constant battle between stubbornly holding on to independence and accepting assistance.
2. Job loss and financial strain: I was a full-time hospice nurse before my PH diagnosis. One young lawyer, diagnosed just last year, shared her heartbreak when she couldn’t afford her PH treatments. Like many, she’s transitioning from financial independence to relying on government assistance or family.
3. Isolation: Some worry about being alone or isolated, fearing their partners might leave them. I’ve often shared how I suggested my husband, Manny, go. Yet he chose to stay with me. As we approach two decades with PH together, I’m incredibly grateful for his choice, though I know stories of partners leaving are common.
4. Perceived weakness: A common concern is being seen as “weak” or “less than” because of our illness. I’ve struggled with this over the years, though I’ve found ways to cope and change this perception.
5. Dying: Many fear dying from this unpredictable disease. We may worry about the ever-present shortness of breath and the possibility of not taking another breath. Thanks to my experience, I was able to remind the newly diagnosed that today there are more treatment options than ever, offering hope and better management of PH.

These are only a few fears our PH community faces, but it’s important we address them. Let’s continue supporting one another and developing coping strategies as we navigate the unique challenges of PH.

Do you or your loved one share these same fears? What other concerns come to mind after reading this column? I’d love to hear your feedback in the comments below. 

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.